June 28: Greetings from Baltimore! We are in the second leg of our journey to find a cure for Idan. We are in Baltimore attending the national IDF (Immune Deficiency Foundation) conference, along with more than 1,000 other patients and caregivers diagnosed with an immune deficiency and over 30 professionals who have experience treating such diseases.
Among the 1,000 patients and caregivers, it seems there are about four families affected by some form of Hyper IgM here (yes, there are several classes of Hyper IgM). We had an opportunity to meet them, and shake the hand of one of the oldest Hyper IgM patients in history – he just turned 40 – which brought tears to our eyes.
We also spoke to several doctors. We had a very long conversation with a doctor in Chicago performing transplants for Hyper IgM patients, as well as a doctor in Seattle who is an immunologist that works closely with the transplant team. Both had yet another different technique for transplant, and we now have even more options to choose from. Seattle, which was not at the top of our list, has moved directly into our radar and we are considering speaking to their transplant team.
We have learned some new facts along the way, including that Idan has the most severe form of Hyper IgM based on the fact that he has no CD40L function. Apparently there are those that have some function to their CD40L (the cell that allows the T-Cells and the B-Cells to communicate with each other), and in those cases the clinical effects of the Hyper IgM can be milder. Idan, however, has zero CD40L, so his Hyper IgM is more severe. That said, there seems to be a concensus that, with the bactrim and immunoglobulin therapy he is taking and the other precautions we are taking to keep him away from germs, he is likely well protected until transplant.
We have one more day of the conference left. We’ll post another update if we learn anything new tomorrow.
Love to all,
Amanda, Akiva & Idan