It was an amazing experience at the NY Conference and kudos to Cooley’s Anemia for organizing this event.
I was so glad to meet the other thalpals. I met Andy again (but always a pleasure to see him). Taking time out of one's busy schedule and travelling to help thalpals is selfless and we are really blessed to have him. It was a joy to meet Sharmin and her husband. They are amazing and it was so good to see them in person. I missed seeing Little A, but I am sure I will see him some day (May be in one of the NHL teams playing hockey). It was also good to see Bostonian and his wife. Also, met hopefulmommy, who showed amazing quest for knowing what is best for her daughter. It was also nice to see Miaki and his son who travelled from Australia.
I was also glad to see so many others at the conference. The 56 year young gentleman, Sharmin referes to is indeed a fighter. He had problems when he was in India and the doctors had given up on him, but he took the fight and came over to US for treatment and that was 19 years ago. There were thal’s who came with their kids. Thal’s are now are getting the message - they can live longer like non-thals (if they comply with the treatment) and I could see a lot of enthusiasm in them. I also heard at the conference there are more than 400 reported pregnancies in thals and I am sure that number might NOT include pregnancies in a lot of countries.
The highlight for me was Dr. Vichinsky. I did only attend one of his session (which was on Alpha Thalassemia) and I was blown off by the way he presented himself. He talked about the seriousness of Alpha Thalassemia. It was a warning to the doctors (Remember – this was a session for the doctors), from what I see when he mentioned to the doctors in the room to worry about Alpha Thalassemia. He indicated the inter-relation between the genes needs to be understood better. With the growing number of mutations, more study needs to be done. I was shocked to hear that there are 1 billion people in South East Asia alone with Alpha Trait status. He talked about Alpha Thal needing prenatal diagnosis and the inability to test Alpha thal with clinical picture.
It was indeed a pleasure going to the NY Conference where I could meet so many and learn quite a bit.