The brave words below are from a young woman with dada2 (Kelsey’s PAN is a manifestation of dada2). She is an inspiration to me, and I am proud and honored to share her words with you. Thank you, Anna Maria.
My name is Anna Maria. I’m 24 years old and in February, I had a bone marrow transplant. I can say what I experienced and what I live by myself. In July 2017, I was told that I had to undergo bone marrow transplant therapy and that I would have no other solutions other than that.
I found myself facing two paths: one was to decide to continue in the disease which would soon bring me to death, or decide to fight for a living and then undergo the bone marrow transplant. If I am still here, it is because I have decided the second way. When I was told all this, I was very scared because it meant postponing my degree, university exams, enrollment in specialist university, the carefree age, the outings with friends, and many other things.
I cried a lot, then I told myself that without health and the transplant, I would have renounced all these things and much else, I would have renounced life itself. In short, I would have faced a few years, always spent in hospital to feel bad. While with the transplant, I would have made some sacrifices in this first year, but then I would have had a beautiful life and I would have enjoyed all the things I lost.
So with courage, I took this choice or the choice to live. I immediately understood that it was an important step in my life and I am very happy with this choice. I will always keep it in my heart and I will be able to tell it to others. Of course now my path is not finished yet. I’m halfway, but I can tell you that I’m very well. I came to a point where the white blood cells were no longer produced because the lymphocytes had taken over. I suffered from very strong vasculitic episodes. All these problems had invalidated my life, I was not really well.
Transplantation is the best weapon currently available to eliminate vasculitic episodes due to DADA2 and is strongly necessary, if not indispensable, to refurbish the immune system. To give courage regarding the issue of hair loss: I obviously lost them too, but if I have to be honest, I find myself much more beautiful like that!
After about two months from chemotherapy, my hair is already growing back. We who face all this, the pain, the suffering, we are special, and we are brave. This gives us a march more than the others. I can tell you that I’ve never been so happy in all my life.