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. - 14 - ------------------------------ Diabetes and Prolonged Q-T Syndrome - Continued:- 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 censuses 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 - 15 - ===================== I have withheld the name of the submitter -- this courageous person is very involved and is always coming up with new angles and reasons why the census records should be released for our usage. Muriel M. Davidson <davidson3542@home.com>