So I just joined a major autoimmune biorepository at Mayo Clinic.
I joined because we need answers and I am tired of being told "we don't know" and taking drugs meant for something else that MIGHT work.
I am tired of being told but I don't fit into what little is know about what they know about my autoimmune disease and having it listed as "her general autoimmunity" because it is not understood.
I am aware that as women, we lag behind in being researched and treated.
I can't count the times what I have was grouped as the "flu" by a doctor who is just guessing at best and finding out a few years later that I have a very unusual immune system.
We need answers now, so I am trying to make that happen, for myself and every other person who is being told "we don't know" and given a drug meant for something else….