It sure was hard on me when my daughter was born with a rash and
the drs. had no clue as to why. I had a lot of guilt that maybe I
did something wrong when I was carrying her. At age 9, I was told
that she had tumors on her optic nerves. Then her daughter was
having the same symdoms but not as severe. Grand-daughters arthitis
dr, who also is a genetic dr, told us about nomids. I have never
seen my daughter with clear skin until a year ago when she went on
anakinra. I sat and cryed. She has lost most of her sight and some
hearing, drs say that it won't come back but it won't get worse. My
daughter is 28 yrs old and my granddaughter who is 9 yrs old are
here at NIH for there 1 yr check-up. Becky & Tiffanie are doing
wonderful. Becky has never had so much energy as she has now.
Anakinra is a miracle drug. Now they will come back every 6 months
for a check-up. I have 2 sons older than Becky. They are fine.

Lynda (Seattle, Washington)