Hi Muriel I am from Mass., my family on both my mother's and father's side have Canadian roots- Nova Scotia and Quebec. My husband has basically the same heritage. I read your attachment and only wish I had nearly so much to go on! My mothers genealoghy has been researched all the way to the French records burning. Her Acadian roots show the first couple known to carry the recessive gene for Tryrosinemia. I read that in Quebec all children are tested for this at birth. My cousin has PKU- also a recessive gene. My family is the one they base the movie of the week on- at least it seems so. My mother has had cancer four times, had her first heart attack at 46, has a very long history of medical problems. Similar problems in her siblings. My real concern, however, is my daughter (26 years old today) has what appears to be Cystic Fibrosis although the sweat test is in the gray zone. She responds well to the treatment and is followed at a CF clinic. However it took until she was 17 for someone to look past the not quite positive test and to treat her. She has been tested for the 70 common mutations (there are over 800) with no match. The conclusion I have come to is that my husband's family and mine come from close areas and we could carry the same rare gene thus our daughter might have inherited 2 of the same rare mutation. When reviewing what I do see in the family I find the expected childhood and early adulthood deaths - but I suspect we have more than is typical on my father's side. My father's sister died while a baby from what might have been CF- there was no diagnosis in the 1920's. His brother adopted his children (CF men are 98% infertile), died early of pancreatitis and pneumonia and had a lifetime of severe lung problems. CF carriers are being found to have some of the symptoms. Of note is sinus problems and pancreas issues. My paternal grandfather died young of pancreatitis, another paternal uncle died from pancreatic cancer. My grandfather was Angus Bernard McDonald although he insisted his name was Bernard Angus MACDonald. The MAC was always stressed. We thought he had 2 sisters. We knew he was raised near Boston and one sister raised in Boston. We learned in 1978 that Angus was one of 7 children. He and his sister were taken to the USA when the mother died. Where did the other children go? I have the sponsors of all the children, their names, their grandmother's maiden name (LAHEY give or take some vowels in spelling), her siblings names and birth place and dates ( Millbury Ma for 5 kids, and then Pictou), the grandparents names and grandmothers maiden name on the MC/MAC D side (Cooney) as well as all the aunts and uncles and birth dates. Beyond this everyone has disappeared. My younger daughter had a sickness between 5 and 6 where she was hospitalized and her liver tests were "off." She had another incident at age 9. She had surgery at 14 and we almost lost her to severe complications; she was an inpatient for 2 months and the problems linger 8 years later. She had another ilness at 16 with some liver enlargement and a dangerously low white cell count of 2. Several months later she had severe fulminent hepatits (not due to any of the infectious types of hepatitis.) She followed a pattern for a herititary disease called Wilson's and had positive lab work for this. However, she was so sick she was not clotting her blood and the conclusive test for Wilson's is a liver biopsy that could not be done for a few months. She was negative for the biopsy. Now the CF medical doctor has suggested both girls have the same genetic problem. I see no need to adding biologically to this family line more sick children if we could document this is truly a genetic problem. My two cousins both lost little boys about 15 and 16 years ago. Both were newborns, one died of pnemonia. The mother of one of these little boys had extremely severe asthma (CF?) and was on massive doses of steroids. She contracted a rare form of lymphoma at age 42 and died a couple months later. She had Burkitts Lymphoma, rare in America. I wonder if the steroids reduced her immune system allowing her to contract this viral type of cancer. We have lots of weird health problems and I would so much like to get a "feel" for the family history--if only I could find it! If we do have CF then there could be others in the extended family who have been diagnosed and they would likely have one of the more common mutations as well as a rare gene. Canada will also in some cases test for the rare genes. So that is my story. I do have another question- how do you research the names that Morgan posts? They pop up as Email addresses. Are we to write to the email and request their info? I posted a request to this list about anyone researching my family line- does this mean Morgan automatically includes my names in his data? Probably all in the FAQs? We do not have any MS but I know several people dealing with this dread disease. Awful how it strikes in ones prime. I have been checked due to some visual symptoms but I was told I do not have it. Good luck with your own research and thanks for answering my question, Ginny [ginnyg <macd428@mediaone.net> ======================================== Hi Ginny:- Sincerely hope you have an up-to-date card file -- very important. Your family has many diseases -- keep smiling -- often hard to do! As for Morgan -- I am unfamiliar with this name and any site. Hopefully a reader will be able to assist. You have also mentioned several diseases that, to date, I did not know about -- my grandson just sent me an email about one. He is studying to be a research doctor of some type. > Hi Ginny:- > Would you believe I am originally from Nova Scotia, have three brothers > and other relatives still living there. > I am sending an ATTACHMENT -- it is safe to open -- unless it picks up > germs after it leaves my computer. > The attachment is my submission to the Expert Panel and has many diseases. > > Where do you live in Nova Scotia -- what are the symptoms if you > are "hell bent" (also my expression) on learning more. > > I found funeral home records, will administration papers, and many > more papers very important -- my gr.gr.gr.grandmother had "a paralytic > condition" in 1824, my gr.aunt "creeping paralysis" and my youngest brother > has had MS for 37 years. > > Please keep in touch, and from Nova Scotia -- check Fabry's Disease, > researched of all places at Tancook Island. > > For a taste of home, check my unfinished web page at > <http://homepages.rootsweb.com/~downhome/> > Say Hi to my little Scottie -- and enjoy my lighthouses!! > > Muriel M. Davidson <davidson3542@home.com> > > ginnyg wrote: > > > Hi Muriel > > > > I am a rather new member of the NS list. > > > > I read your post and you reference to genetically inherited diseases. > > > > A part of the reason I am hell bent on what appears to be an impossible > > search for a line of ancestors is my need to trace back a genetic disease. > > Is there such an area where others are also tracing these things back? > > > > Thank you, > > > > Ginny > > > > macd428@mediaone.net > > > > ----- Original Message ----- > > From: Muriel M. Davidson <davidson3542@home.com> > > To: <NOVA-SCOTIA-L@rootsweb.com> > > Sent: Wednesday, May 24, 2000 1:31 PM > > Subject: [NS-L] Michael J. Fox Foundation for Parkinson's Disease Research > > > > > THE FOLLOWING MAY BE COPIED -- Muriel M. Davidson > > > <davidson3542@home.com> > > > All Canadians salute Mike Fox -- now only 38, was diagnosed with > > > Parkinson's Disease about 10 years ago. Truly a great Canadian! > > > > > > There will be a web site available where donations may be made, > > > but I could not access it. > > > > > > Are there any letters re Parkinson's Disease to add to Genetically > > > Inherited diseases? If not, will copy from the internet tomorrow. > > > > > > Others with this affliction are Janet Reno, diagnosed in 1995 and > > > Pope John Paul -- plus many others. > > > Muriel M. Davidson <davidson3542@home.com> > > > > > > > > > > > > > > > © 1999 Parkinson's Disease Foundation, 710 West 168th Street, > > > New York, NY 10032-9982 . 800.457.6676 > > > Site Design and Hosting by KeyNote Media, Inc. > > > > > > > > > ==== NOVA-SCOTIA Mailing List ==== > > > As of April 26, 2000, there were 1115 subscribers on this list! > > > >