I hope everyone is doing well.
Last week, I took my daughter to her first hematologist appt at Johns Hopkins. She is 9 weeks old and has SS )o: Her hematologist told me that there are new, better treatments for SS coming down the pike, including less complicated bone marrow transplants and safer drugs, and that treatment will be much better for her generation than the preceding generations. However, I forgot to ask him when will those treatments be available. He also said that gene therapy might be available within the 10 years or so. I am keeping my finger-crossed that new, better treatments will be available for all SS patients sometime within the next year or so.