Alien of thal anomoly?

Hello everyone my name is Ian, I have been battling thal my entire life.  They tell me I have intermedia but only b/c my Hb is about 8, other than that I have major and even more symptoms that my docs at Children's hosp of Philly, Penn, and many other hospitals saying that they have only ever heard of 1 patient in England w/ similar symptoms,  I have been in hospitals  a good half of my life.  Battling hundrends maybe even by now a thousand blood clots, superficial, deep, emboli....I just hope I don't stroke of have a heart attack.  Having thal, has kept me behind in school and not because I'm stupid to be a PT you must have a B avg and I can't even stay healthy enough to get through my jr, year!  I am repeating my 3rd time because I either get septic, clots, or treatments all the time that I can't even attend class.  I am starting Desferal infusion tomorrow because can't tolerate exjade.  Does anyone else ever have clotting issures or seizures due to extrodinary pain and hyperventilation?  I want to meet others with this disease.  My doctors actually call me the "White Sickle Celler" because my syptoms more closely match with that disease. Screw those selfish Conservatives with the stem cells, we shouldn't have to suffer the way some of us do and others for that matter with ANY disease.  I look forward to meeting people with thal!  Everyone take care be healthy and enjoy life because you only live once!

Hi Ian and 

I couldn't agree more that we should be moving full steam ahead in the field of genetic research. The use of embryos that are left over after IV fertilization to produce stem cells shouldn't even be an issue. These embryos are eventually destroyed anyway, so let's be intelligent and use them to help mankind.

Do you know what mutations you have? I would be interested in knowing. Have you had any contact with Dr Cohen in Philly?

hi ian,
my son who is 5 is a 'white sickle celler' .  he has a low hb because he has the thal trait from me and my husband has the sickle cell trait which means he has all the symptoms of a sickle cell carrier.  mind you, i always knew i had the thal minor triat but my husbands sickle cell trait was never picked up even in genetic counselling before we decided to have children.  could it be that your parent have a trait from each?

like you christian has spent all of his young life in and out of hospitals with pain episodes.  he was more prone to strokes because of the blood clotting and the sickle shaped blood cells were causing damage to his body organs.  that is when we decided (15 months ago) that he would have regular blood transfusions.  so he is now being trated as a thal major hence why i am so reliant and happy withthis site as it gives me so much valuable information.  since regular transfusions his sickle cell percentage has dropped and so too have the pain episodes.
we only just started chletion 2 and a half months ago.
hope you find all the info you need to help you on this journey.
regards vic