New to the site and looking for help!

Hello, I am new to this site and not a very experienced chatter or mailing person. I am 57 years old and the mother of a 34 year old thalassamia intermedia patient. My son is bi-racial.  I am Greek and his father was an Africna-American. My son was diagnosed with TI when he was 5 years old. Doctors in Germany told us that it is not such a severe illness and the only thing necessary would be to monitor his Hb level.  He had only 3 blood transfusions in the first 30 years of his life. Now, there are complications and sideeffects of TI extramedullar hematopoesis and pulmonar hypertension, etc. The physicians do not seem to be able to tell us what to do. I hope to find support and help at this website.
Sorry if the introduction is too long. Any information you might provide will be greatly appreciated. Thank you. Desperate.

Where are you located in Germany? There are actually some fine thalassemia doctors in Germany, so it may be a matter of changing where your son is treated, but I need an approximate location so I can make some inquiries.

We do have one listing for Germany in our treatment center board.

Universitätsklinik Eppendorf
Hämatologische Ambulanz der Kinderklinik
Martinistr. 52
20246 Hamburg - Germany
fon: +49 40 428033796

Hello Andy,

Thank you for the reply. We are located in the south near the city of Ulm. There is a doctor familiar with Thalassamia, Dr. Cario. He is a pediatric and told us that we could see him but he cannot interfere with the treatment of his colleagues the hematologists who treat adults. To me it seems that they are not so fmiliar with TI and not really interested in talking to Dr. Cario.

D.

I'll let you know what I can find out. I would also suggest checking out some of Bobby's posts, as he is also intermedia and has much experience in dealing with the issues unique to occasionally transfusing intermedias. You can find posts by a member by clicking their name. That will take you to their profile, where you can click on "show posts."

hi lady
i am also greek and live in germany...
i have the pulmonary hypertension since 10 yerrs...
it have  imediatly to treat...
u speak german?
my phonenr. 01604344112.       panos

Yes, please contact Panos. Let me know if you still need more info after talking to him. I can contact Katerina if more info is required.

Welcome to the site,

I am sure you will find the help you need here.  The best help you will receive here is the friendship and support of others in the same situation.  Together we are a wealth of knowledge for each other.

Once again Welcome!

Sharmin 

Hello every one,

I am so overwhelmed with all the support. I wished I had discovered this site a lot earlier.  Andy thanks a lot for the guidance through the web. It helps a lot to know how to contact people and view their posts. I am learning.

Panos, thank you for the post. I speak German, English, and Greek.  I will try to get in touch with you soon. I might even talk to my son and see if he wants to contact someone who understands his situation. He is very withdrawn and depressed.

Sharin, Thank you for the support and virtual embrace. Yes, there is a wealth of knowledge in this site.

 

Welcome on board! I am sorry to hear about your son's problems. Those annoying doctors! I hope somehow your son can sneak in by this pediatric doctor. Please keep us up to date and tell your son about this great supporting site.