Hi Craig, You can go to the IDF website, www.primaryimmune.org, to submit any questions or inquiries using the Ask IDF feature (the purple icon at the top of your screen) or go to primaryimmune.org/services/ask-idf. We would be happy to help you find a doctor in your area. Thanks and be well!
I have several genetic disorders like hyper igg ige and Bechets disorder. I have the bl51 gene and I have about 10 conditions. I have autoimmune conditions as well with the genetic stuff. I have been sick since 94 and I am 48 now and getting treatment of gamunex weekly with rituxen every 3 months -and that combo helps and lasts about 2to3 months of feeling good. I prefer to feel good and be on a immune suppressant all the time but that's not allowed. I think killing cells and rebuilding them is working for me. Why I don't know.
Thanks for this. Been living all my life with this.
Just found out I have high IGe with EOE. Trying to find out more info.
😊
I'm diagnosed with AR-hyper IgE due to a spink5 (lekti1) loss of function and a tyk2 gain of function mutation.
Still taking new patients? Lol
What’s the quickest treatment?
How do I get tested? What dr do I go to?
Hi Craig,
You can go to the IDF website, www.primaryimmune.org, to submit any questions or inquiries using the Ask IDF feature (the purple icon at the top of your screen) or go to primaryimmune.org/services/ask-idf. We would be happy to help you find a doctor in your area.
Thanks and be well!
I have several genetic disorders like hyper igg ige and Bechets disorder. I have the bl51 gene and I have about 10 conditions. I have autoimmune conditions as well with the genetic stuff. I have been sick since 94 and I am 48 now and getting treatment of gamunex weekly with rituxen every 3 months -and that combo helps and lasts about 2to3 months of feeling good. I prefer to feel good and be on a immune suppressant all the time but that's not allowed. I think killing cells and rebuilding them is working for me. Why I don't know.