GENETICALLY INHERITED DISEASES PERSONAL FAMILY DISEASES By Muriel M. Farquhar Davidson, U.E. 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. - 1 - ----------------------------------------------- Genetically Inherited Diseases - Continued:- MY PERSONAL FAMILY RECORD 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. - 2 - --------------------------------------- Genetically Inherited Diseases - Continued:- 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 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. - 3 - ------------------------------------ Genetically Inherited Diseases - Continued:- 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 color 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 1. 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. 2. 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. 3. 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. - 4 - ----------------------------------- Genetically Inherited Diseases - Continued:- 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. 25 Crestview Avenue Brampton, ON L6W 2R8 <davidson3542@home.com> - 5 - ======================== The above is lengthy -- more another day -- I only wish the type could be reproduced as submitted. Senator Lorna Milne said she now has two books to work from, THE MYTHS OF CENSUS by Gordon Watts and GENETICALLY INHERITED DISEASES. IF readers prefer not to have the other pages posted, let me know, please. I have shown the page divisions in case readers wish to print the submission. Muriel <davidson3542@home.com>