Hi Joan:- As this seems to be a disease with widespread connections, I am forwarding it to the CANADA-CENSUS list, also Senator Lorna Milne -- who likes this type of "ammunition" in her fight to get the census records released. Many thanks -- it is notes and memos like this that help others. Also, as you mentioned, some doctors might not recognize it. Muriel M. Davidson <davidson3542@home.com> ====================================== Joan at Tna3@aol.com wrote: > Hi Muriel, <http://www.thalassemia.com/message.shtml> > > Thanks for the new URL, it worked just fine!! I haven't had a chance to > read it all yet, but it's great to be able to get more info on this disease!! > > As I said, my aunt had thalassemia, and I can attest to the fact that it is > indeed an "ugly" disease! Growing up, I was always told that "Coolie's > anemia", which is what everyone in my family called the disease (WHY, I have no > idea!!!) was not strictly an Italian disorder, but rather a disease that > affects people exclusively of Mediterranean heritage, and it was always > explained to me that Coolie's anemia was to Mediterraneans what Sickle Cell is > to Africans. > I was never tested for the trait when I was younger, but I KNEW that I had > it because all of the kids in my generation who did have the trait were all > anemic, and iron supplements did not help, as was the case with me. > It wasn't until I got pregnant and was prescribed prenatal iron pills that > I was finally tested for the trait. I told my doctor that I wouldn't take > the iron pills because historically, I get none of the benefits from them, > but all of the side affects. My OBGYN had never heard of Thalassemia, so he > sent me to Buffalo Children's Hospital's genetic research lab, where I was > conclusively diagnosed with the trait. > It was at that time that I was told that my husband, who is 100% German, > also had to be tested because I had tested positive. I questioned this, > stating his heritage, and was told that it is rather rare, but that it is > possible for non-Mediterranean people to carry this trait. I've wondered > about this for seven years now, because my father's family were immigrants, > and were very clear about this disease being restricted to people from the > Mediterranean. This is ONLY my opinion, but I believe that thalassemia IS a > Mediterranean disease, and my husband was tested STRICTLY in case his > heritage turned out to be something other than what he was raised to believe. > > I'm sure that the website you sent will probably have LOADS more info than > I do, but if you have any questions, I'd be happy to try to answer them!!! > Did your e-mail imply that you have recently found out that you do have the > trait for thalassemia....or perhaps that the trait is present in your family??? > I do SO wish that some of these so called "private" files would be made > public record, for reasons JUST like this!!!! Did you know that if I were to > keep my trait a secret, and my children test negative for the trait, that > it's still conceivable that my grandchild, who could easily by no more than > an eighth Mediterranean, could marry someone who was also only an eighth > Mediterranean, and they could have children with this terrible disease > without having ANY IDEA that it was even possible?!!!! > I'm 39 years old, and it wasn't until I started researching my family history > that I found out that I am an eighth Scottish, so how easy could it be for MY > grand and great-grandchildren to never know about their Italian heritage, and > the deadly disease that COULD go along with that heritage!! > The way it works is that since I have the trait, my kids have a 50% chance > of having the trait; if they DON'T have the trait, their kids still have a > 25% chance of having the trait. If ONE of my grandchildren DO have the > trait, then their children, my GREAT-grandchildren, go back up to that 50% > chance of having the trait and possibly having a child with thalassemia!! > And the numbers continue with that same pattern, so if the trait continues to > pop up, several generations removed from me...and Italy, could easily pass on > this disease!! Scary, huh?!!!!! > Again, THANKS for the info!! > Joan ============== Joan -- I am glad I do not have the thalassemia trait -- only anemia from chemotherapy. My reason for the diseases was (1) A submission to the Expert Panel to hopefully get census records released, and (2) Assist others who have this trait -- in turn they help each other. - Muriel