Report of Expert Panel Delayed

The Report of the Expert Panel on Access to Historic Census records, originally scheduled to be brought down by 31 May 2000, has been delayed.  In response to an email I wrote to Mary Ledoux of Statistics Canada I received the following on Monday 5 June 2000:

‘Further to your query about the report of the Expert Panel, the Chair of the Expert Panel, Dr. Richard J. Van Loon, wrote to Minister Manley on May 31, 2000, indicating that "the Panel has essentially completed its work and is conducting the final preparations of the report. However, given the requirements for formatting, translation and the like we will not able to submit the report to you by May 31 as we had originally hoped. We will be
able to submit by the end of June and we hope and trust that this delay will not create problems for you and the Government." A copy of Dr. Van Loon's letter will be posted on the Statistics Canada web-site very shortly, probably later today or early tomorrow.’

MP Murray Calder Presents Bill

MP Murray Calder, on 2 June 2000 presented to the House of Commons a Bill to obtain access to Historic Census records.  His Bill (C-484) replicates that of Bill S-15 presented by Senator Lorna Milne, currently in second reading in the Senate of Canada.  As both Murray Calder and Senator Milne are in the Liberal party, I would encourage the Honourable John Manley to accept the wording of these Bills as suitable for a Government Bill and proceed with the business of getting them passed and enabled.

On 11 May 2000, Murray Calder presented to the House our petition on release of Post 1901 Census.  The petition contained more than 6000 signatures of residents from every Province of Canada.

Senator Lorna Milne speaks

On April 29, 2000 Senator Lorna Milne addressed the Annual Meeting of District Two of the Ontario Genealogical Society at Woodstock, Ontario.  She was kind enough to provide me a copy of her speech, the text of which follows:

Ladies and Gentlemen, I am truly honoured to have been invited to take part in this historic Year 2000 annual meeting for Region Two of the OGS — the first such meeting of the new millennium, if you would believe some pundits!

As genealogists we are all keenly interested in the history of one particular Canadian, the “little guy” — the person I am here to stand up for today.  This was the individual citizen, our ancestor, who came to this country, opened it up for future generations, worked from dawn to dusk alongside his wife and family in a true working partnership all of their lives, and never made it into the history books with the so-called great of the land. 

As the prominent historian, Father Joseph Gravelle of Otter Lake, Quebec, said before his death in 1971:

Genealogy is not concerned with Blue Bloods and First Families but rather with the Little People who made up the backbone of the country, who pioneered and settled and made their own contributions in their small and untrumpeted ways.

We all can read in every library about the great movers and the shakers of the day, but the ordinary people are the real heroes of history;  they are the ones who actually made it happen, so I want to talk about being able to access their stories, now that Statistics Canada has seen fit to reinterpret, actually misinterpret, the regulations for the 1906 census and a 1918 law to mean that no results of any census taken after 1901 will be released EVER to the public.

I am not the only one in Parliament who shares this concern.  John Bryden, MP for Wentworth-Burlington, has introduced a Private Member’s Bill about Access to Information that actually almost made it onto the floor of the House for debate, but it has been dropped again to the bottom of the Order Paper.  And I must tell you quite frankly that the chances of any Private Member’s Bill actually getting all the way through the process to become law, is both time consuming and fairly slim.  This is the second time that John has tried to get this type of a bill through.  So you can imagine what an extremely narrow chance a Senator’s Private Members Bill really has of ever becoming law.

Bureaucrats really do hate to let the public have access of any kind to government information.  They seem to labour under the paternalistic delusion that it belongs personally to them, rather than to the people of the country.  As I mentioned, a few years ago, genealogists, historians and demographic and medical researchers discovered, to their horror, that Stats Canada was not going to allow the National Archives to release any further census results after the release of the 1901 census in 1993, after the traditional passage of 92 years to ensure an individual’s privacy.  In fact it was John Geysson of Pembroke, the President of the Upper Ottawa Valley Genealogical Group, who brought it personally to my attention although I knew that members of the Ontario Genealogical Society had been getting agitated about it at least a year earlier.  Like most of us, I had assumed it was a bureaucratic error that would quickly be corrected.

After a vain attempt to get MPs interested in taking on this project, I decided to do something about it myself, and began the necessary research to write a Private Member’s Bill (I guess in the Senate we should call them Private Senators’ Bills!)  In the meantime, with the help of a great many genealogists and historians, I also instigated a speech-making, letter-writing, faxing and e-mailing campaign to MPs and Minister John Manley, who is in charge of Statistics Canada.  The campaign was the important part of this effort.  In fact it was the vital part, and I believe it is going to pay off, because Minister Manley’s office was absolutely flooded with paper, not only from Canadian researchers, but from all around the world.  I think they could paper the walls of the entire department with all the letters and e-mails they received.  MPs from across the country also were flooded with our concerns, and they began to press Mr. Manley as well.  So much so, that he has put together a “Panel of Experts” (mind you, no genealogists are included!) to investigate the subject and advise him, by the end of May, on a method to implement access to the census.  I do believe that Mr. Manley sincerely wants to be able continue to allow us this historic access to our own records. 

Hopefully the panel will find a way to do so, but in the meantime my own Access to Census Records bill is purring along at the Second Reading stage in the Senate.  If the panel disappoints us all, I will once again start to push the bill, and I may be calling on you all for continued public support.

I am happy to tell you that Bill S-15 has received the support of many of my Senate colleagues and that support for it in the House of Commons is growing.  This is due, by and large, to the efforts of many you in this room and to fellow genealogists and historians from across the country, who have made it clear to their representatives that they do not want to lose access to this important information.

I want to point out, once again here tonight, that, unless we can change the law and open up these extremely important census records, we will all lose access to the single most valuable resource that reveals the entire history of the 20^th Century in Canada.  This is our history!  We will never be allowed any access to the first census records of western Canada, the 1906 census, the one taken right after the provinces of Manitoba and Saskatchewan were formed. Anyone whose family immigrated to Canada during the 1900s will never find their roots in the census.  Anyone who is trying to prove their western Métis or Aboriginal background will never be able to do it, because such a background can only be proven through family groupings.  Anyone who is tracking the generational western movement of settlement patterns in Canada will never be able to do, except anecdotally.  Anyone who is tracing an inherited disease, to help identify and treat people who should be aware of their possible condition so that they can make informed decisions on that basis, will never be able to properly do it.  Anyone who believes that there was a Government conspiracy to identify and intern immigrants from the Ukraine during the first World War, will never be able to find out if the census was improperly used for this purpose, and I can tell you that the suspicion is rampant among Canadians of Ukrainian back-ground, nor will the Government be able to lay these widespread fears to rest.  And I could go on and on.

I believe that after the 1901 census was released in 1993, some bright soul in Stats Canada actually reread the regulations under which the 1906 Census of Western Canada was taken, and panicked!  They asked the Department of Justice to give them a legal opinion, and our troubles began.

So let me tell you some of the facts.

Clause  # 26 of the 1906 regulations, part of the “Instructions to Commissioners and Enumerators” section states:

            26.  Every officer or other person employed in any capacity on census work is required to keep inviolate the secrecy of the information gathered by the enumerators and entered in the schedule or forms.  An enumerator is not permitted to show his schedules to any other person,  nor to make or keep a copy of them, nor to answer any question respecting their content, directly or indirectly;  and the same obligation of secrecy is imposed to commissioners....  The facts and statistics of the census may not be used except for statistical compilation, and positive assurance should be given on this point IF A FEAR IS ENTERTAINED BY ANY PERSON THAT THEY MAY BE USED FOR TAXATION or any other object.

This clause was used as justification, by the lawyers of the Department of Justice when they were asked for an interpretation of Clause 26 by Stats Canada, for a legal opinion that it would be against the law to release the 1906 census, or any further census results, forever.  And this was in spite of the fact that the IDENTICAL clause (Clause 23) was included in the regulations under which the 1901 census was taken — that’s the one that has already been released, with absolutely no adverse consequences or complaints I might add.  I want to re-emphasize that this secrecy condition was ONLY included in the instructions to the census takers, and clearly applied ONLY to those contemporary employees of the government.

Isn’t it too bad that the lawyers did not read just a few pages further on, where the regulations go on to state equally clearly that the census was “intended to be a permanent record and WILL be stored and preserved in the Archives for future reference”?  We must also remember the important fact that NOTHING was private in the Archives at that time.  There were absolutely NO restrictions on access to any of the holdings.

What had changed in the interim between 1901 and 1906?  Absolutely nothing!  And furthermore, this so-called ‘promise of perpetual secrecy’ that is made so much of by Stats Canada and the present Privacy Commissioner, was NEVER mentioned or debated in the House of Commons, or in the Senate, or in the newspapers of the day!  Never!!!!  I am absolutely certain that secrecy, ad infinitum, was not intended by the legislators of the time, and that no one but bureaucrats even knew about it, for it was tucked away in the regulations, and only in the section that was meant solely for the census takers of that time.

So I must tell you that, in my opinion, Stats Canada is clearly breaking the law by refusing to allow the release of  the 1906, 1911 and 1916 census data, after 92 years have passed.  In fact it is my understanding that the present National Archivist has written to Statistics Canada demanding the release of these censuses to the Archives.

Now in 1918 matters changed somewhat when a new Statistics Act was passed, and secrecy provisions were included in the act itself , although still only within the section that pertains to census takers and commissioners and clearly intended for the census workers of that time, so it is really the 1918 Act, and all subsequent Acts, that we must work to have changed.

It is quite clear to me that any concern that Canadians have about the release of confidential information is contemporary, and not historical.  In 1906 their concerns were about the government using the census data for taxation purposes.  By 1931 the major concerns were that the census not be used, “in connection with taxation, military or jury service, with the compulsion of school attendance [that one has certainly fallen by the wayside] with the regulation of immigration or with the enforcement of any national, state or municipal law or by-law.”  By 1951, when Stats Canada changed to individual forms for each household, the instructions included non-disclosure to “other government agencies such as income tax, national defence, etc., or to any private organization.”  There’s another rule that has certainly been trampled, as Stats Canada now regularly sells information to private organizations right and left, even as it refuses permission for the National Archives to release the early census data!  Strictly speaking, it may not be “personal data” but it is identifiable right down to your postal code!

An additional irony behind all this is that the Archives already has in safe-keeping the 1991 census in its entirety!  Four huge football field sized rooms full of the raw, un-microfilmed census forms are sitting there, sealed in plastic in climate controlled comfort at the taxpayers’ expense!  I have seen them!

I KNOW that Canadians’ concerns about privacy were then, and still are, contemporary.  We have proven that we are not concerned about the privacy of our ancestors’ information, or its being released to the public after 92 years have passed, because there has never been one single complaint about the release of historical census information, either to the National Archives or to the Privacy Commissioner!  NEVER!  Not one!!!!  Not even in the Province of Newfoundland and Labrador, where the 1931 census has already been released!

As genealogists, it is incumbent on us all to continue pushing for an end to this official stupidity; for the right to access the historic data in our Canadian Census.  I must tell you that the work I have been privileged to do on Bill S-15 fills me with great pride.  I feel proud because the outpouring of support for this undertaking shows me that we Canadians are mindful of our history.  We want our family stories to be told and passed on, not forgotten by future generations, or locked up in the vaults of Stats Canada forever.    I believe it was the American philosopher, George Santayana,  who said,  “Those who cannot remember the past are condemned to repeat it.”  Family history gives our younger generations this memory, a firm foundation to stand upon while they explore their future.

I urge all of you here today to keep up the good work in your research, and to keep the pressure on your representatives in our campaign to make the census material available to us all.  John Finlay, here in Oxford, needs some heavy duty persuading! 

My bill suggests one solution, but when the Expert Panel produces its ‘Report to the Minister’ next month I will need your help once again.  It will be essential, again, to rev up the pressure on your local MPs and on the Minister, to make sure that he really does bring in legislation to correct the problem.  Whether it is a version of my bill which offers a solution, or completely different does not matter.  The end result does.  So, in advance, I thank you!  But get ready to write those letters and send those e-mails!

Debate on Bill S-15 continues in the Senate

On 4 May 2000 Senator Joan Fraser continued the Debate in the Senate of Canada on Senator Lorna Milne’s Bill to obtain access to Historic Census records.  The extract from Hansard is copied below.  If you look carefully you might see a name that you recognize. <]:-)

Debates of the Senate (Hansard)

2nd Session, 36th Parliament,
Volume 138, Issue 52

Thursday, May 4, 2000
The Honourable Rose-Marie Losier-Cool, Speaker pro tempore

Statistics Act
National Archives of Canada Act

Bill to Amend-Second Reading-Debate Continued

On the Order:

Resuming debate on the motion of the Honourable Senator Milne, seconded by the Honourable Senator Chalifoux, for the second reading of Bill S-15, to amend the Statistics Act and the National Archives of Canada Act (census records).-(Honourable Senator LeBreton).

Hon. Joan Fraser: Honourable senators, I should like to say a few words about Bill S-15, if you will bear with me. I shall bear in mind that the hour is late.

I should like first to congratulate Senator Milne for her indefatigable work in this valuable cause. When she began with an inquiry in the last session of Parliament, I think some of us thought that she was talking about something fairly obscure, something that was of interest to a few Canadians, but not really of general importance. Now we know better.

This bill addresses what threatens to create a serious gap in Canada's historical record - the policy of Statistics Canada that individual census records from all censuses from 1911 on must remain secret in perpetuity. Statistics Canada believes that this policy is grounded in law and in a promise made by Sir Wilfrid Laurier in 1906. Given that belief, Statistics Canada is correct in refusing to make the individual census returns available to researchers, unless instructed to do otherwise by Parliament.

There is room for some argument about whether Statistics Canada's belief is correct.  I was particularly interested to read a brief by Gordon A. Watts, of Port Coquitlam, B.C., that was submitted to the Minister of Industry's expert panel on the release of historic census records. Mr. Watts has done a careful search of all the parliamentary debates in 1905 and 1906 relating to statistics and the census. He has been unable to discover any place where Sir Wilfrid in fact made this famous promise to Canadians. Indeed, Mr. Watts says there was no debate at all about privacy, confidentiality or secrecy relating to information regarding identifiable individuals - no debate at all. There was a major debate in 1905 about the new act respecting the census and statistics, but it did not, he says, touch upon secrecy.

What actually happened, apparently, was that secrecy was imposed at that time not by legislation or by a prime ministerial commitment to Parliament but by regulation. The regulations were drawn up by the then minister of agriculture, Sydney Fisher and, under the terms of the act, acquired the force of law. As is so often the case now, as then, there was no debate in Parliament about these regulations.

In a later revision of the actual legislation in 1918, they were incorporated into the law itself, presumably because by that time they had become accustomed to practice. Indeed, in practice, the Dominion census had been providing confidentiality for individual returns ever since Confederation, which in 1905 was still fairly recent history, well within the lifetime of most parliamentarians. However, the question of perpetuity does not seem to have been addressed, and that is what concerns us today.

In fact, Mr. Watts suggests that the famous secrecy surrounding individual records may have been imposed almost by accident or, in any case, as a simple corollary to the rule that corporate records had to be protected, because companies obviously did not want their competitors to have access to details about their operations. I cannot say what Minister Fisher had in mind when these regulations were adopted. However, we can easily conclude, upon reading the instructions given to the employees of what was to become Statistics Canada, that the fundamental point was to reassure Canadians that their records could not be used by other government departments. We could not then and we cannot now use these records for income tax purposes, military service, immigration and so on. This is of course essential for any census in a free and democratic society.

However, to say that we can never use these records, even generations later, for legitimate research purposes, seems to me to be going rather far, too far.

Even if it is true that Parliament originally intended the records to remain secret forever, it is the job of each succeeding Parliament to reassess past policies in light of present needs. Parliament today has the right to change a decision made by Parliament in the past, even a decision made after lengthy and full debate. When the original decision in question was made by simple regulation, not debated at the time, there is even more reason to revisit it now, nearly a century later.

Senator Milne's bill offers a neat solution by having Statistics Canada transfer the individual returns to the national archives, which would, 92 years after each census, then make them available for research in proper archival terms. Ninety-two years is the period that was applied for the release of individual returns in all censuses before 1911, so it has the virtue of consistency. As I suggested here last year, however, I think we should perhaps consider lengthening that term slightly, now that so many people are living well into their nineties. I think it would be appropriate to have a 100-year term or perhaps even a little more. Clearly, we do not wish to invade the privacy of persons who are still alive.

The basic principle that these records should become available at some point is, in my view, indisputable. They are simply too important as historical records. They are useful for genealogists like Senator Milne, but also for historians, social scientists and even for some physical scientists such as biologists.

The information they provide is literally irreplaceable, not available from other sources, or not available in this detailed, comprehensive form.

Other major countries have considered this dilemma, this need to reconcile the need for privacy with the need for good historical records, and they have concluded that, after a suitable period of secrecy, the individual returns should be made available. Australia and the United States, for example, have both reached that conclusion. I believe that Canada should do likewise.

The expert panel is expected to report by the end of this month. I hope it will make appropriate recommendations to end this policy of perpetual secrecy, and if it does make those recommendations, perhaps the government will act accordingly and rapidly. If not, however, Senator Milne's bill is here to ensure that the right thing will in fact be done, and I am more than pleased to support it.

On motion of Senator Kinsella, for Senator Johnson, debate adjourned.

Submissions to the Expert Panel

One of our Committee members, Muriel Davidson requested others to join with her in putting together a submission to the Expert Panel on Access to Historical Records.  The main thrust of her submission was to deal with genetically inherited diseases.  Her support documentation included email sent to her by others who have been affected by Genetically Inherited Diseases.

GENETICALLY INHERITED DISEASES

Submission to the Expert Panel on Release of Historic Census Records

Prepared by Muriel M. Davidson

April 20, 2000

Esteemed Members of the Expert Panel:

Re: Genetically Inherited Diseases Submission

Many family researchers have found potential “time bombs” in the familial data they have collected.  I have been one of these researchers, and suggested a combined submission about Genetically Inherited Diseases.  Many have submitted suggestions, and I have tried to include a cross-section of known inherited diseases.

We have used all sources of proven and true research papers, and all agree the only true picture of the lives of our ancestors is within the Canadian census records.  We are very anxiously and hopefully awaiting the release of the 1911 records in 2003 - we only wish we would be able to view later census records within a short time for medical reasons.

Families with inheritable diseases/genes live from day to day - one never knows when the disease will pounce again … that is the way we feel.

The internet has provided much information about ALS, Q-T Syndrome, Paget’s Disease, Alzheimer’s, Osteoporosis, Depression, Diabetes and others - but it is the daily personal living in fear, not knowing how far back the defective gene was in action.

Personally, I was fortunate to have family history from my grandfather; he gave me information as he knew it, and I have found he was correct.  Ironically, I am unable, at the present time, to learn the information my grandfather provided for the 1911 Census .

Citizens of Canada, plus many with Canadian roots, anxiously await your report.  We sincerely hope all members of the Expert Panel will be in favour of census release, not just for family trees, but for important medical records.  Being able to provide our doctors with substantiated records would save long waiting periods prior to a diagnosis, as happened to my youngerst brother, now 61, a victim of Multiple Sclerosis for 37 years.

Many thanks for working as members of this very important committee.

Sincerely,

Muriel M. Davidson

Family researchers, searching for roots of their past, became aware of the possible non-release of Post-1901 Canadian census records years ago. In 1993, when the 1901 Canadian census was released, the fact was re-emphasized it might be the last release.  The 1901 Canadian census records were the first to include dates of birth, adding to one's family history.

It was not until I became an internet user in November 1998 that I learned the full extent of the governmental problem. It was evident that, unless records were released for family research -- not just for governmental statistical records – the Canadian public would lose 100 years of their history.

Canadian census records concern all residents of Canada, as well as many from other countries who have Canadian roots. As one of many family researchers poring over various types of documents, I have found there are none as historically correct as our census records, thus forming a glowing montage of life years ago.

There have been protests against release of records for family research -- citing both Privacy and Statistics Acts. Due to family pride taught by my grandfather, I feel very certain he would be pleased I could hopefully learn the information he gave the government in 1911.

Personal Research

My personal research for over forty years include much more than money earned or bushels of wheat. Research for my family has also included United States census records of 1900, 1910, 1920 and extracts from 1930 as my mother and her sisters were born in Maine.

My main requirements are locality, names, ages, origins, religion, occupation and, if given, medical data.

Questions asked by enumerators on the 1911 Census included categories of deaf, dumb, blind, insane, disabled also employed or unemployed. The answers to some of these questions have to be painstakingly gathered and recorded. These same answers and records affect many today as we check for unknown and possibly inherited diseases.

Genetically Inherited Diseases

 
Genetically Inherited Diseases, in my belief, are medical problems/genes which have appeared in two or more generations. In some families and diseases, the problem may not show in successive generations, thus becoming known as a "skipper".

These diseases are the cause of much heartache in many families, as they have been in mine. I have heard from many via internet during the past 12 months, telling their personal family tragedies.

My Personal Family Records

 
The following are my personal record of Genetically Inherited Diseases -- my reason for desiring release of 1911 and subsequent Canadian census records. My avenues of research have included past census records releases, church and funeral home records and obituaries. Other documents include legal papers including deeds, wills, administration of estate -- my files are open to all concerned family members.

Some have remarked that "we are never given any problem we cannot handle".  It does take effort to keep smiling with the record of Genetically Inherited Diseases in my own personal family.

Multiple Sclerosis

I first learned about this disease, although called by another name, while researching the Loyalist family history of my gr.gr.gr.grandfather, Finley McIntosh.  He was a member of the 76th Regiment of Foot, native of Glenelg, Scotland, arrived in Shelburne, Nova Scotia on November 5, 1783, following disbandment in New York City.

Finley McIntosh died in 1824, according to church records. Although his estate was not very much compared to today's standards, his death was well-documented by various papers. I have found a will, probate papers, letters of administration, plus others.

The most valuable document was a Request to Administer the estate by a son, William McIntosh. The reason given was:- His mother, the former Christiana Brown, also from Glenelg, Scotland, was aged, infirm, with a severe paralytic condition. Her death is recorded in church records of
1829. This was my first indication of a possibly known and documentable
medical condition.

Creeping Paralysis

 
The next known family member with this disease, by now known as "creeping paralysis", was my great-aunt Alice Farquhar, my grandfather's sister.  Recorded printed data filed at former Public Archives of Nova Scotia, states an unknown supplier of data submitted the information that my great-aunt had been "crossed in love" by her lover, took to her bed, stayed there for 30 years until she died. This was very untrue, as the family members received help from the so-called lover and his wife, as nursing care was greatly needed.

Multiple Sclerosis

 
My youngest brother, Clyde R. Farquhar, now 61, was a tall, slim man, 6' 2" in height, 40 years ago. He was studying to be a chartered accountant, which he achieved and formed his own company. Clyde had never limped, had been lieutenant of his Army Cadet Corps. On one vacation to my home province, Nova Scotia, 39 years ago, I met his wife-to-be – but also noticed my brother limped. When questioned, he replied "I always walk this way". Clyde and Ruth married, followed by his collapse two weeks later. Ruth's brother, a medical doctor and hemaetologist, knew of my family concerns. He received positive results for the Multiple
Sclerosis tests 37 years ago.

Today, Clyde is wheelchair-bound, but continues to help others by testing new drugs.  When he has a physical at Victoria General Hospital site, Queen Elizabeth II Health Science Centre, Halifax, Nova Scotia, he is linked by computer to seven leading medical facilities in the United States and Canada. Therefore, his doctor receives guidance from Johns Hopkins, Mayo Clinic and others of that note. Clyde had lost his ability to speak -- among drugs he had tested was one that allowed him to regain control of his throat and speech muscles.  I had not heard my brother's voice until he called me as a birthday present last October -- saying "I'm back!"  As he can no longer have life insurance, he invests in real estate in Halifax, with all rentable properties insured and his oldest son as manager.

Brain Tumors

My tabulated family history of brain tumors only covers 40 years.  The list includes people of various ages and seems to be a maternal disease pattern.

One of my mother's sisters lost two babies -- both with brain tumors.  A brother and his wife lost one little boy, age 13 months – same illness.

The latest to succumb to a brain tumor was my oldest brother, Donald S. Farquhar, 73, died July 6, 1999.  Diagnosis was at Victoria General Hospital, Halifax, in 1998, but due to lack of province-to-province transfer of patients, he was kept waiting for several months. An operation was impossible. Laser treatment was available at London Health Science Centre, London,  Ontario -- the Red Cross Society took care of his travel arrangements and housing - again, due to lack of province-to-province patient transfer. During the last few months of his life, the necessary wheelchair and hospital bed cost a great deal - paid by the family.

Macular Degeneration

This irreversible eye condition leads to blindness -- again from my maternal family.  One aunt, now 98, blind from macular degeneration, hopes to "SEE" her name on the 1911 Canadian census records -- she was born in Bucksport, Maine in 1902.

My annual eye checkup includes a check for macular degeneration -- regarded by my doctor, a well-known Brampton eye specialist, as an inheritable disease.

Cancer

There have been too many cases of this dreaded disease – from both maternal and paternal families. Many family members have suffered various forms of this illness.

Now 75, my first diagnosis was at the age of 21 -- malignant growth to the appendix such as my mother also had at age 21, my daughter at 13. I was 42 when cancer struck again. At present my facial cancer was diagnosed six years ago with facial chemotherapy and periodic consultations.

Other familial forms of cancer have included liver, spinal, bowel - but not breast cancer. It is similar to a giant octopus, of which we should be aware, never knowing the next victim.

Arthritis and Osteoporosis

Arthritis seems to have appeared in every family, to more than one person. Some of the arthritic problems are very severe - hampered by non-funding of some drugs in Ontario, e.g. Celebrex and Methothrexate. Non-funding of Fosamax in Ontario for osteoporosis is a disadvantage to all old age pensioners.

Paget's Diseases include some of the above: multiple sclerosis, osteoporosis, arthritis -- there is a great deal on the internet re: this subject.

Diseases in Adoptions

Not all Genetically Inheritable Diseases are passed down from generation to generation -- but unknown to the new parents of an adopted child, the disease comes with the child, having been passed down in the child's family. One brother and his wife adopted two children.

They adopted a boy at first -- no problems. The girl was only nine days old when received, dressed in dirty, ragged clothing which my brother immediately destroyed. Signs of behavioural problems were noted very early, these accelerating as she grew older. After she married, her first baby girl was adopted out in British Columbia, due to a supposedly mental problem. With care, that child is now doing fine, attending university, age 22.

Her only son, now 19, became part of my family when he was four years old. He was unable to colour pictures, needed toilet-training, and with study, I learned his behaviour problems were the result of Fetal Alcohol Syndrome. My brother, the boy's grandfather, attempted to learn his
adopted daughter's origin - adoption files were closed even to psychiatrists. The doctors had hoped to learn about my niece's real parentage. His mother has since been diagnosed as having schziophrenia, now doing fine on medication.

Two Hopes For the Future

My youngest granddaughter, 21, knowing the family history, is studying toward a career in medical research. Her hope is to assist with development of a blood test that would show any Genetically Inheritable Diseases. A young couple, contemplating marriage, could be tested, and if tests were positive, they could still marry. However, the couple could decide not to have any
children -- thus ending a cycle of genetically inheritable diseases.

My only grandson, 19, knows he could possibly inherit the "skipper" MS gene. He changed
his future plans from space engineer, like his father -- is now in his second year of biology at Waterloo University and looks forward to being a research doctor.

Recommendations

·A question to be added (or substituted) to the 2001 census questions, asking for people to list known Genetically Inheritable Diseases with a YES or NO.  Reason: The present question, " deaf, dumb, blind, insane" and others have been criticized by many. Instead, should I find a YES to any one of these, it would be treated as an answer to a possibly previously unexplained medical condition.

·At present children being adopted are received in basically the WYSIWYG -- What You See Is What You Get -- manner and adoption system.  Complete medical history of both father and mother (if possible), blood types, known genetically inheritable diseases, should be part of the adoption process.  Names of real parents, locality of birth are NOT part of a medical history.

·Census records of people in institutions of long term care:- Back in 1901 and 1911, also earlier, many family members were admitted to "poor farms", county homes or insane asylums. To my knowledge, there are no census records of these members of a family -- they were locked away as if they never existed.  Mental illness seems to be a taboo subject - but one that needs diagnosis.

Summary

From coast to coast, members of the Expert Panel, appointed by The Honourable John Manley, will find numerous families with Genetically Inheritable Diseases.

Many religious denominations now have sealed records, although a great deal of information is available about any person through Access to Information.

Governmental committees have used all the personal information we are seeking. The internet is filled with many family histories, with much more available from the Mormons.

It is sincerely hoped family researchers will be given the "green light" for 1911 and later census records. As a family researcher, I know the census records are very accurate, and this would have depended on information given by my grandparents and others.

The Canadian census records are our one true picture of life as it really was 92 years ago, an irreplaceable history of migration, family members, occupations.

I look forward to hopefully being able to view the 1911 and other records.

Thanking you for your consideration, I remain,

Muriel M. Davidson, U.E.

The following letters formed part of Muriel Davidson’s submission to the Expert Panel and were included with permission of the senders.  Those letters copied here that identify the writers are also done so with permission.  While the original submission to the Expert Panel include identifying information, the names of some of the writers have been withheld here by request

ALZHEIMER’S  DISEASE

By Don Nisbet

Subject: My Letter on Genetic Disease for the Expert Panel

Dear Panel Members:

One year ago my sister and I buried our mother. The feelings of loss when a parent dies are no doubt familiar to those on the panel, but I believe the end of her life must have seemed a blessing to my mother as it ended seven years of suffering and loss.

My mother was another victim of Alzheimer's disease.

Watching my mother slowly reduced from a healthy  and  independent woman looking forward to enjoying the remaining years allotted her to a  confused and fearful person, stripped of dignity and spirit and with seemingly no capacity to enjoy even the simplest things, was painful  beyond description for those of us who loved her.  Only those who have gone through it can  possibly understand.

But our sadness would  not have been unfamiliar to my mother. My aunt manifested the symptoms of this illness six years before her and she had to watch her suffering as well.  In 1956 they buried their mother after years of coping with the burden of caring for my grandmother during her long battle with that same terrible disease.  Our grandmother carried her own memories of the effects of Alzheimer's disease on a family as she, as the youngest daughter, carried the responsibilities of caring for her own mother in the last years of her life -- another victim of that disease.

I have since learned that I have had great-uncles and great-aunts and cousins as well die from the effects of this nasty form of dementia.  It is now beyond question that this disease is in some way being genetically handed down in our family and the fate of my mother, grandmother, and great-grandmother may very well be my own.

There is but one hope for myself and the younger members of our family: the cause of this form of genetically transmitted Alzheimer's Disease must be found and research for a cure must be pursued. I am doing what I can.

As a genealogist I have undertaken the sometimes difficult and frustrating work of compiling my family tree by gathering information from public, private, and family records and memory and turning that family tree into a medical pedigree of sufficient detail and depth that it will be useful  as a research tool for  genetic scientists seeking the causes and the cure of this terrible disease.

Such medical family trees are the bedrock of research into the causes of almost every disease known to be genetic in origin.  Already large family trees have proven the key to uncovering the genes that cause Huntington's Chorea, Cystic Fibrosis, Muscular Dystrophy, and dozens of more common diseases such as types of cancer, diabetes, and heart disease. Canada has been among the leaders in this type of genetic research and many similar studies using family trees are underway across the country. But more needs to be done.

I am hoping to offer, with the full knowledge and blessing of family members, our family tree to genetic scientists studying familial Alzheimer's disease in the hope it will lead to progress  and bring future relief to the tens of thousands of Canadians who face this disease.  When my tree is converted to a medical pedigree all identifying information is stripped from it making it anonymous so it may safely be shared with the medical community.  I fear the disease more than I fear the remote possibility of my privacy being violated.

Compiling a family tree as accurate and complete as I have done would not have been possible without access to Canada's historical census records.  The loss of such future access will significantly damage both genealogy and research into genetic diseases of that there is no doubt in my mind.  I feel the privacy violation, if it can even be remotely considered as such, of granting to historians and genealogists access to census records after 92 years is little to ask for so large a  gain.  I do not accept that the supposed privacy when the rights of the dead take precedence over the right of the living to enjoy healthy and productive lives.

I respectively ask the panel not to forget the real consequences on the lives of hundreds of thousands of Canadian men, women, and children suffering genetic diseases now and in the future if historical censuses are closed or destroyed.

They deserve a voice in this debate.

Thank you.

Sincerely,

Don Nisbet

DEPRESSION

By Muriel M. Davidson

The weather is very damp and the sky is without a hint of sun!  How often have we remarked or heard others say the "day is depressing!"  However, as soon as the sun warms the earth, which lightens our moods, the depressive feeling disappears. Many are not so fortunate as he or she suffers from a disease caused by a possibly inherited gene, not  the weather.

I am referring to an honest-to-goodness illness – clinical depression. This disease, unrecognized by many, is probably the biggest single medical cause behind most human sufferings and
illnesses. This condition strikes as many as one of every five persons. Very often many who suffer from this common malady are undiagnosed. The victims of this genetically inherited disease are generally regarded as strange, weird, often unable to associate with others, which compounds and increases the problem. 

Personally I am one of the fortunate ones with diagnosis years ago. My two sons have also been diagnosed, but my daughter did not inherit this gene, nor did her children. There have been other family members known from previous generations.

Sufferers of depression are all around us -- the homeless, the alcoholic, those trying to survive within the confines of society.  The ailment has no class distinction, is a genetically inheritable
disease -- very often family doctors prescribe sedating medication.

There is still an age-old fear of psychiatrists -- often the patient is simply not referred. Close relatives refuse to accept the family member is a victim of an ancient gene, therefore not
realizing the psychological condition is treatable not only by suitable medication, but mainly family understanding.  Many with clinical depression, unlike the gloomy day depressives, often resort to alcohol, drugs, resorting to crime so more expensive drugs can be obtained. This is the way of dealing with how he or she feels.

Many of the young people who commit suicide or fill our jails and prisons are victims of this age-old mood inhibitor. Although many have a high degree of intelligence, due to depression, they are unable to make friends, become loners and eventually many do commit suicide.

The gene that causes clinical depression dates back to the cave age, is ancient and is not a mutant gene. Depressed brains do not function properly, very often there is a chemical imbalance. The
inability to function properly is similar to brain wires being cut -- preventing the transmission of emotions and rational thoughts.  The victims feel empty, unable to think, often unable to remain
employed. An example of non-functioning brain wires is the inability to send an internet message when the server is unoperational. 

Many family researchers have studied Canadian census records of 1871, 1881, 1891and 1901 -- we are grateful for some of the personal questions asked by enumerators when it seems a family member "disappeared" -- yet still living. Working with church records, we find there generally is NO recorded trace of the relative's disappearance among our census records. 

Years ago, in my family, as in many other families, family members were admitted to the "county home" or "poor farm". with personal family history denoting a mental disorder. This disorder was possibly a form of depression -- unrecognized years ago.

The family members disappeared without a trace because census records WERE NOT taken of institutional residents. Although alive, they were not included, unless residing in a community and he or she were listed as having a mental disability. We are thankful these intrusive questions were asked by the enumerators -- there is acceptance in knowing.

My family members know I suffer from depression, have refused medication, but prefer my own "treatment" -- keep busy and active.  I have accepted depression, part of the healing process – often reading or crocheting is better than routine household chores.

Part of my personal treatment is a great deal of "people contact":-

1. Coordinator of 150 knitters for Brampton Memorial Hospital maternity ward, a volunteer position -- my daughter is my "boss".

2. Eight family history books researched, printed and filed at National Archives.

3. Public relations for my Rebekah lodge, IOOF.

4. Recently serving as liaison for 31 local Brampton service clubs with the local city newspaper, where I had been women's editor.  This is a challenge -- a first!!

5. An active member of the internet-based Canadian Census Release Committee.

My two sons combat their depressive problems differently.  The oldest son is in sales and administration at a large motorcycle shop, races motorcycles and gets rid of any nagging problems at the gym.

The youngest son, a long-distance truck driver, has a chemical imbalance. He combats SADD by turning on lights to counteract lack of sun and Vitamin D, plus medication. 

In summary, many who suffer from depression could live a normal community life through acceptance. People need to be accepted for "what they can do" -- not "what they have". This is
one strong way of living with a disease that dates back to the early days of mankind.

As an active member of the internet-based Canadian Census Release Campaign, it is our sincere hope the Expert Panel will report favourably to have the 1911 and future Canadian census
records made available for research by families faced with Genetically Inheritable Diseases. Many are anxiously awaiting your report.

Thank you for serving on this appointed committee.

Sincerely,
Muriel M. Davidson

Clinical Depression

Hi Muriel,

My name is Pat XXXXX, I live in Scotland and I suffer from inherited clinical depression. Vicky XXXXX forwarded your e-mail to me as she knows about my struggle with this condition.
Luckily, I now have a doctor who understands what is going on inside my head and helps me through.

Depression exhausts me and leaves me like a zombie - I am unable to sleep or function. However, I now know how to spot it before it really floors me and I can take some preventative
action. The first thing I do is clean and tidy the house.  That may seem a little strange but I get very self-critical when depressed so I do what I can to eliminate the triggers.  Then I buy some novels so that when I can't sleep, I have something new and interesting to read. After that I fill
up the fridge and the freezer with tasty convenience foods because I know I won't cook if things get bad and I need good fuel to get this machine (my body and mind) working well again.

Sometimes after all that, the depression fails to take hold and I thank God. More often than not, I do sink into that sticky black pit and then at least I can hibernate in some comfort until it has passed.

Thankfully, it has been some weeks now since I have had a down spell. I know it will return but I also know that it will pass and that keeps me going through the bad times.  I am blessed with great friends and two wonderful children who carry me through. Without them, I would find it much harder to bear.

I get very annoyed with people who don't understand depression and ask me what I have to be depressed about.  Depression is not caused by external forces, it is in my genetic make-up. That doesn't mean that I cannot do anything about the symptoms of depression but I can't change the underlying condition.

Thank you for sharing your experience with me. This can be a very lonely condition and, in my case, some of that loneliness is self inflicted because I avoid company when I am down.

Keep well and busy. Know that you have friends all over the world with the same problem and we are all fighting to overcome it in our own way.

With kind regards from a fellow depression fighter

Pat.

AVAILABLE MEDICAL RECORDS
By Larry McCool

Your description of the way you live with Clinical Depression was very moving. My wife, Doreen, is one of the people that was at the door of a full breakdown before a doctor realized what was happening.

Early retirement as well as medication has done a lot to help -- but crowds are still a very difficult situation. Availability of historical medical records and the genealogical records that would be needed to tie the family together would have, in all likelihood, either prevented the severity of this case or at least forewarned us of the possibility of that type of sickness.

Along with that we now know that in my side of the family we go back to my father and ahead to my grandchildren with diabetes. Earlier family members died early, such as my grandfather
who we suspect had the dreaded disease.

Our latest patient is my granddaughter who was diagnosed with Type 1 diabetes at the age of three.

Keep smiling - we are behind you!

COMMENT RE APPROACH

Dear Muriel,

I have no criticisms to make about your essay on depression, but I do have to say that I was most moved by it. It was a very brave thing to write this, and I think that many people may benefit from reading it. I was especially delighted to read your counter blast to the prevalent dominant approach to treatment with nothing but chemicals.

Power to you,
Bob XXXXX
Calgary, AB

DEPRESSION

Muriel - your message was a powerful one..

As a fellow depression sufferer, although one who is helped by the new serotonin reuptake inhibitors, I am beginning to understand the genetic factors behind depression.

I was recently surprised to learn that my grandmother's sister most likely committed suicide after the death of her daughter in a fire. It's impossible to know if that's where the gene that keeps my serotonin level at less than optimum levels was inherited, but it's a clue.

My eldest daughter has the same condition and is currently taking Zoloft while I take Paxil. The difference these medications make is nothing short of magic even at low dosages. But finding even circumstantial evidence of serious depression in my family history helps us to understand that this isn't a 'character problem' as it was depicted for years, but an actual chemical imbalance that is inherited and is probably the reason that I had suicidal thoughts as young as 8 years old.
Thank goodness, those days are behind me but I lived with them for over 40 years.

Name withheld by request.

STRABISMUS
By Jack XXXXX

Hello Muriel:

My name is Jack XXXXX. The XXXXX family does not have congenital disease, but does have a congenital defect - strabismus, or crooked eye. It usually is the left eye, but occasionally it is of the wandering variety, in other words it alternates from one eye to the other.

My youngest sister and I have it, but my oldest sister and my brother do not. I know it has occurred in past generations, but I have not done any investigations in that area.

Strabismus does affect the sight, as the inturned eye tries to compensate for the defect so that you don't see double. If the child that is born with it is operated upon prior to age 3 the sight can be saved.

If not operated on (to straighten the eye) the retina becomes dead where the vision from the good eye overpowers the inturned eye. In my sister's case, because it was alternating, the sight was not affected - she was operated on at about age 13 or 14, and her eyesight is normal.

Jack XXXXX,
from the sunny Peace River area
of Beautiful British Columbia.

DIABETES and PROLONGED Q-T SYNDROME
(Name Withheld)

To Members of the Expert Panel:-

In my family, maternally and paternally we have various genetically inherited diseases. Paternally, we deal with adult onset diabetes and astigmatism.

Please be advised I am writing to ask for the Post 1901 censuses to be released for the purpose of genealogical research by individuals and medical professionals.

Diabetes has claimed the lives of several members of the --------- family. Most recently, my great uncle in September 1999 and my father in November 1999. My father fought with his diabetes for 30 years. It won, but during the battle, it took his right leg, and part of his left foot.  The amputations were something he never recovered from.

The family has always been very athletic. Dad's grandfather was the trainer that took the Regina Pats to the World Series in 1926. My father was a serious roller skate dance skater who competed throughout Canada and the USA during the 1940's and 50's. It never ceases to amaze me, when watching ice skate competitions, that my father could do what they did on roller skates. His love for roller skating was passed on to his children. We were put on roller skates as soon as we could walk.

I however, was never able to seriously pursue the sport. Due to the genetic astigmatism in my family, I'm legally blind, I'm extremely farsighted, and was cross-eyed (eye operations cosmetically corrected this, but failed to improve my vision). My eyes work independently of
each other, impairing my co-ordination and depth perception. My sisters and a paternal cousin also have minor vision problems, as does my son (including one operation to correct the cross-eyedness).

It is interesting to note, I'm doing genealogical research on my paternal family. Because of the public access to England's 1881 census, I have found a -------- in a school for the blind. In the 1851 census, I found an unmarried (not widowed) 74 year old female --------- living in a workhouse. The first questions that popped into my mind upon discovering her: "Was she blind/cross-eyed? Why had she never married?" She's listed as a pauper. I know the taunting
I took for my eyes and we live in gentler times. She is the only -------- pauper I have found. Everyone else is employed in the family trades or a widowed annuitant.

My older sister and younger sister are both diabetic. My younger sister's diabetes is out of control, I haven't picked up this genetic trait from my family. But, I did pick up my maternal line's genetically inherited disease. Both my younger sister and I have it. Our sons are
borderline. The defect is called Prolonged Q-T Syndrome.

It causes Sudden Arythymic Death. The heart is healthy, but the auto response nervous system is not. Our heart beat has trouble following a rhythm. An ordinary pace maker would correct it. It is
one cause of Sudden Infant Death. Thankfully, it is extremely rare.  In the USA 25,000 people have been diagnosed with it out of a population of over 250 million.

Q-T syndrome is silent and deadly in most families afflicted with it.  It is usually diagnosed after it has killed within a family. Even then, it is often missed as you can't do an ECG on a dead person. Q-T often strikes apparently healthy children and young adults. Imagine your child dropping dead while running a race in a school sports day, or running home to share a triumph or trauma. Will the excitement of a wedding day or birth lead to a funeral?  The startling noise of a thunder clap can kill in my family. We, those who are diagnosed are allowed no physical or emotional exertion.

I am not allowed to swim. If I faint in the ocean, I die. I'm not even allowed to drink Neo-Citran for a cold. I have to be careful when I go to the dentist and make sure that certain anaesthetics are not used. There is a large list of prescription drugs I'm not allowed, I have to read over the counter medicines to make sure they won't kill me, or possibly my children. I look and feel healthy, but I'm not. Walking upstairs can exhaust me. I can break into a sweat washing dinner
dishes. I was born in 1953. There is not a lot of things I can do, things I would love to experience with my 4 year old daughter.

But, you know what I can do is sit at my computer using large fonts so I can see to trace my maternal ancestry. By following bloodlines I will be able to warn them there maybe a silent, swift killer lurking in their branch. I know not to startle them with a blunt revelation, but to ask about fainting/dizzy spells (syncope) and if given a positive response or told of a young person's death to carefully advise my new found relative to go see a cardiologist.

There is no cure for Q-T. Its victims survive on pills, and if that fails to stop the syncope the result is an implant of a cardioverter/defibulator.  Your very own little personal CPR unit. I'm supposed to have someone who knows CPR with me at all times. I'm being monitored by my
cardiologist and I'm on a wait list for the implant.

I'm one of the lucky ones. My mother wasn't so lucky. She died at the age of 46 from a heart attack. It is her diagnosis, that may be saving my life. I think she would be happy to know, I'm trying to find her relatives to warn them. The public release of the 1906 and 1911 Census es will help me find them. The family oral history is her father's family has been in Canada for five generations. My grandfather was born there. How many siblings did he have? Where are they? I don't know. The censuses will tell me. Has Q-T been passed into your family?  Wouldn't you want the warning?

I had time to prepare for my father's death. There was no warning with my mother. Both were traumatic for me. From honest experience, the sudden death was harder to take and adjust to, particularly for my younger sister who was only 17 when Q-T hit our immediate family.

With the British Columbia vital statistics, birth, marriage and death online, I have been able to find that my maternal grandfather was married prior to his marriage to my maternal grandmother. I may need to trace half relatives. Surname BROOKS. Did my grandfather have more than one child? The 1911 Census will tell me.

Please give my family a fighting chance to survive by supporting the public release of the Post 1901 censuses. Thank you for listening.

Sincerely

Name withheld by request.

FABRY'S DISEASE

Lloyd A. Horrocks, Ph.D., Professor Emeritus

Hi Muriel,

One inherited disease of particular interest is Fabry's disease, which has a focus on Tancook Island, Lunenburg County, Nova Scotia, and should be included. The island is a perfect place for familial research due to the constant residency pattern.

 
Fabry's disease is a disorder with an enzyme missing for processing a particular kind of fat that is on the membranes of cells.

I used to talk about this in lectures to medical and graduate students (before I knew that I had ancestors from Tancook Island!).

Let me know if you need more information.

Lloyd A. Horrocks, Ph.D., Professor Emeritus
Dept. of Molecular & Cellular Biochemistry, The Ohio State University

The purpose of this text is to provide patients and their families with information about the symptoms, diagnosis, management, and experimental treatment of Fabry disease.

In 1898, two dermatologists, Johann Fabry in Dortmund, Germany and William Anderson in London, England, independently described the first patients with the disorder now known as Fabry disease. Forty years later, it was recognized that the disease resulted from abnormal
deposits of a particular fatty substance (known as lobotriaosylceramide) in blood vessel walls throughout the body. In the 1960's, the primary defect was identified as the inherited deficiency of the enzyme, -galactosidase A, which is normally responsible for the breakdown of
globotriaosylceramide. The gene for this enzyme was isolated and characterized in 1986 at Mount Sinai, permitting improved diagnosis, especially of female carriers, and the capability to produce large amounts of the normal enzyme for trials of enzyme replacement therapy.

What Is the Nature of the Metabolic Defect in Fabry Disease?

The body performs thousands of metabolic processes which are necessary for the production of vital compounds and the recycling or removal of others. One such compound called globotriaosylceramide is formed of three sugars and a fatty substance called ceramide, and is found in most cells of the body.  Normally globotriaosylceramide is broken down (metabolized)
to lactosylceramide by the enzyme -galactosidase A. In patients with Fabry disease, this enzyme does not function properly or is absent, and globotriaosylceramide cannot be broken down in
cells, leading to its progressive accumulation.


Thus, Fabry disease is often referred to as a "storage disorder" because of the abnormal accumulation of globotriaosylceramide.  In patients with Fabry disease, globotriaosylceramide accumulates preferentially in the walls of blood vessels. As the abnormal storage of this fatty compound increases with time, the channels of these vessels become narrowed, leading to decreased blood flow and decreased nourishment of the tissues normally fed by these vessels.
This process occurs in all blood vessels throughout the body, but particularly affects small vessels in the skin, kidneys, heart, and nervous system.

How Is Fabry Disease Inherited?

Fabry disease is an inherited disorder. The defective gene is on the X-chromosome, which is one of the two chromosomes that determine an individual's sex. Females have two X chromosomes, one inherited from each of their parents. Males have one X chromosome inherited from their mothers and one Y chromosome inherited from their fathers. A female Fabry carrier has one X chromosome with a defective Fabry gene and one X chromosome with the normal gene, and thus is protected from the major manifestations of the disease. Males with Fabry disease have one X-chromosome that contains the abnormal gene and thus, show symptoms of the disease.

The inheritance pattern of Fabry disease is termed "X-linked recessive inheritance." A female carrier of Fabry disease has a 50% chance of transmitting the defective Fabry gene to her sons
who will develop Fabry disease. In addition, she has a 50% chance of transmitting the Fabry gene to her daughters who will be carriers like their mother. It must be emphasized that these risk figures apply to each pregnancy individually, that is, for each male child there is a 50% chance to have the disease, and for each female child there is a 50% risk to be a carrier. 

If a male with Fabry disease and an unaffected (non-carrier) female have children, all of their daughters will be Fabry carriers and none of their sons will be affected with Fabry disease.

Fabry disease occurs in all ethnic groups. It is estimated that one person in 40,000 has the disease.

How does Fabry disease affect males?

Typically, the disease begins in childhood with episodes of pain and discomfort in the hands and feet (known as acroparesthesias).  The painful episodes may be brought on by exercise, fever, fatigue, stress, or change in weather conditions. In addition, young patients develop a spotted, dark red skin rash (known as angiokeratoma) seen most densely from the umbilicus to the knees, a decreased ability to perspire, and a characteristic change on the cornea of the eye that does not affect vision. 

The disease progresses very slowly and symptoms of kidney, heart and/or neurologic involvement occur between the ages of 30 to 45. In fact, many patients are first diagnosed when the accumulated storage material begins to affect kidney or heart function. Therefore, it is important to annually monitor kidney function by blood and urine tests because kidney disease is a major complication that can occur in affected males.

A common heart symptom in Fabry patients is mitral valve prolapse, which is a benign condition that is present in approximately 10% of the normal population. More serious, but rarer, complications of Fabry disease include heart disease and strokes.

To Members of the Expert Panel

I have two brothers with a disease that the doctors say is passed on in the family.  My oldest brother has had this since age 6 weeks and is 47 now.  The family has many times been told because of the high temps and swollen spleen and all the rest that he would not make it through the night.

He spent most of his young life in hospital and away from home.  He was a medical ? in Canada and the United States til he turned about 18 years old.

My other brother started with differing symptoms and was diagnosed later in teem years.  Both are under treatment and will be all their life when an attack occurs and we are looking for where and when in the gene pool this was introduced.

They say of all who have this it can be traced to Jewish background.  It could have been way back when but it could have been within 100 years.

This is what got me started on tracing family history and I am staggered at the opposition to release of census due to the stumbling blocks that it puts in front of me.  It is hard enough researching and hitting brick walls.

I understand the dilemma because of working the census for over 25 years but a date of 100 years would be sufficient for protection of material.  Just how many live beyond 100?  A few – but I am sure the ones that do would not worry as that is the past.

Sincere regards,

Name withheld by request.

Dear Muriel:-

Thank you Muriel for your note.  It was very touching to me & very kind of you to write & tell me you enjoyed the posting on the Wells family mailing list.  I’m glad it was forwarded on to you.

My father died 10 years ago from ALS, which I believe is a form of Multiple Scheroses & it was really hard to see him go to such a terrible disease in such a short time & knowing there was nothing I could do to stop it.  Sometimes we just don’t understand why God lets these terrible things happen to such good people.

After some time passed I started searching my family history to learn about my ancestors & also to try to find out infor on the causes of deaths of not only his family but my mother’s too.  I wanted to have another child but did not want to pass on a bad gene to another generation.  I was told by my family doctor there was no way of know if I was a carrier back then, if I had a son then the chances might be higher.  I had a daughter but the thought never goes away.  She will never know the love & kindness of her grandfather but she is my sunshine.

My dad would have loved the treasure hunt I have been on looking for infor on his XXXXX family, not just for the medical infor but for the family history & tracing them back in time to learn more about their lives & the times they lived in.  I don’t find any such illness in his line but it was not known by that name many generations ago.

I didn’t share this story with the mailing list - my father wasn’t from the Wells family but I couldn’t help post the note to let others know the importance of learning their family medical history if not for themselves then to do it for the sake of their children.

My father-in-law had diabetes & he has passed away a few years ago.  His mother lost both her legs from it & now my brother-in-law- found out he also had it a year ago & and has lost a foot due to it.  I have had my husband checked & my ofdest daughter checked & will always keep that in mind in the future to watch for the signs so we can catch it early.

I just hope others will be aware of learning more about their medical history & discuss it with their family doctors.  The more we learn about our medical history the better we can help the doctors to treat our families.

Thanks again for your note &

Happy trails in all your researching in 2000

Name withheld

AMYOTROPHIC  LATERAL  SCLEROSIS   (ALS)

Internet Information from

ALS Society of Canada  <alscanada@als.ca>

ALS is a rapidly progressive, fatal neuromuscular disease. It attacks the motor neurons responsible  for  transmitting  electrical  impulses  from  the  brain  to  the  voluntary  muscles

throughout the body. When these muscles fail to receive messages, they eventually lose strength,

atrophy and die. There is no known treatment.

Anyone can get ALS. Over 3,000 Canadians currently have the disease. Two to three

Canadians die every day of ALS.

Why is it known as Lou Gehrig's Disease?

Lou Gehrig, a famous baseball player in the U.S. during the 1930's, became afflicted with ALS. He was known as baseball's "Ironman". Strength, agility, excellent health - Lou Gehrig had everything it took to become a baseball legend.  But Lou Gehrig had something else.  At the peak of his career, he was diagnosed as having Amyotrophic Lateral Sclerosis (ALS).  He died at the age of 38.

When was ALS first discovered?

ALS was first described in 1869 by Jean-Martin Charcot, a French neurologist. Since that time a number of theories about the cause of ALS have been developed. Some scientists believe it is possible that ALS is caused  by a slow-acting or latent "virus". If it is caused by an organism, there is absolutely no fear that it is contagious.  There is no increased incidence among medical personnel who deal with ALS patients.  Work has also been done on the possible role of the thyroid gland and trauma.

What causes ALS?

The cause is not yet known although several theories are now being researched. At present neither a cure for ALS nor a means of prevention is known. In 1993, scientists announced in a paper published in the British journal "Nature" that they had isolated the gene associated with about 20% of the cases of the inherited form of the disease. While only 10% of ALS patients have this genetic predisposition there is no evidence of a clinical difference between the familial and the sporadic forms of the illness.

What about environmental causes?

The very high incidence of ALS on the island of Guam, in Western New Guinea and on Kii peninsula of Japan may provide some clues about environmental influences. Heavy metals such as lead and mercury are suspected causes, as is aluminum, which can poison the body and cause ALS symptoms. Some people may have a genetic makeup which makes them susceptible to an environmental cause of ALS.

What parts of the body does it affect?

Because it attacks only motor neurons, ALS does not affect the mind. The person with ALS remains mentally sharp and in full possession of the senses of sight, hearing, taste, smell and touch. Bladder and bowel muscles are generally not affected by ALS. ALS seldom causes pain, although some people do have cramps and secondary discomfort from lengthy sitting or lying down.

Is sexual function affected by the disease?

No.

Are there different types of ALS?

There are three classifications:

Sporadic (which is the most common form of ALS)

Familial (a small number of cases suggest genetic inheritance of ALS)

Guamanian (a high number of cases of ALS occur in Guam and the Trust Territories of the

Pacific)

What are the early symptoms of ALS?

ALS usually becomes apparent either in the throat or upper chest area or in the arms and legs. Some people begin to trip and fall; some lose the use of their hands and arms; some find it hard to swallow and some slur their speech.

Can you "catch" ALS? And what does it do?

ALS cannot be "caught" - it is not contagious. In 90% of ALS cases, it strikes people with no family history of the disease. Ten percent of the cases are classified as familial or inherited ALS. It may occur at any age, with the likelihood increasing as people grow older.  However, many are struck down in the prime of life. ALS occurs equally in men and women.

Because the disease frequently takes its toll before being positively diagnosed, many patients are debilitated before learning they have contracted ALS. The disease does not affect the senses of taste, touch, sight, smell and hearing, or the mind.

ALS wreaks a devastating effect on patients as well as their families. As they struggle to cope with the prospect of advancing disability and death, it consumes their financial and emotional reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment.

Is there hope for people with ALS?

Yes, certainly. Based on recent medical discoveries, drug trials are now underway.  Advances in our knowledge about other neurological diseases may also continue to shed light on the cause of ALS and help us find a cure.

What is the incidence of ALS? How many people in Canada are affected?

It is not a rare disease, anyone can get it. It affects about six or seven people out of every 100,000.  Over 3,000 Canadians currently have ALS. Two to three Canadians die every day of ALS.  Most people with ALS are between the ages of 50 and 75 though there are cases of teenagers with the disease. In about 5-10% of cases of ALS there is a hereditary pattern.  About 90-95% of cases are "sporadic" ALS: anyone can be affected. This can occur at anytime within two to five years of diagnosis.

What is the average life expectancy?

This is between two and three years for the newly diagnosed person. However, it is important to understand that improved medical care is resulting in longer and more productive lives for people with ALS.  Twenty percent will live more than five years and up to 10% will survive more than ten years.

For further information:  <http://www.als.ca/alsWHAT.htm>

BREAST CANCER

By Ricki-Ann XXXXX

My name is Ricki-Ann XXXXX.  I am an  American  Citizen with  Canadian roots. I  began to do my family history as a way to relieve stress and became addicted to it. Through  access  to  Canadian  records,  particularly  census  records,  I am  able  to  trace my lineage further  and  further back.  The census records provided me with a wonderful starting point  from which I have gathered much information about my family's heritage and history.

I have also uncovered  information  about  medical causes of death of several blood relatives.  It seems "cancer" and/or "cancer of the breast" are a lot  closer  to  home than I ever thought.

This  information  scared  me,  but  prompted  me,  at the age of 32 to get my first mammogram,  when under  normal circumstances it isn't even suggested until after age 40. By age 40 it may have been too late. There were abnormalities in the mammogram.

I now go for  follow-ups every  3-6 months at my  physician's  request to track any changes, and keep ahead of the "abnormality".

If I had never found my great great-grandmother's name, I would have never found the names of her family, or theirs, or the "abnormality".

I am deeply  grateful to access  of  such  records as  census  information,  and  truly believe  it  may  just  save  my  life.  Breast cancer does "run" in my family,  there  is  some genetic link,  and now I am aware. Awareness is half the battle.

Preventing  access  to  such  records  may  prevent  others  from  the  advanced warning  that I received.  That would be tragic.

Respectfully

Ricki-Ann XXXXX

USA

Have you made a major submission to the Expert Panel on Access to Historic Census Records – on behalf of a genealogical or historical society, or yourself?  If so, please send me a file(s) containing that submission so that I might include it in future columns, and thus inform our readers.

My next column will include a major submission by Don Nisbet, one of our Committee members and a prolific researcher and submitter of information on Post 1901 Census issues.

The Canada-Census-Campaign-L mail list was set up to provide a forum for those interested in obtaining release of Historic Census Records in Canada.  It is not for look-ups or individual queries.  Your comments and questions relating to release of Post 1901 Census records are welcome.  Subscribe to the list by sending an e-mail to

With only the word subscribe in the subject line and the body of the message.  Do not include any other text or signature files in the body of the message.  To subscribe in Digest mode, change the ‘L’ in the address to a ‘D’.

If you have not already done so, please send me any responses you have received from your Member of Parliament regarding the Census problem.  You are invited to view the website at

Until next time.  Happy Hunting.

Gordon A. WATTS   gordon_watts@telus.net