Dear All,

Betty is right - this auto immune ride is a roller coaster! But,
thankfully Amy is correct too! There is so much more information and
progress for auto immune disorders than there was 7 years ago. Denise, I
think Evans is such a small group that there aren't researchers lined up
to do anything about it. However, anything they learn about lupus,
sclerderma, other more common auto immune diseases, can ultimately help
the Evans patients as well. We were told by our first doctor that he
would not make Nick an invalid - that we would give him sound information
(he was 16 at the time) and leave activity choices up to him. He's the
same doctor who cleared him to play football during his senior year in
high school. He told us he could not give us any idea of how long he
would have any quality of life so he might as well enjoy it while he
could. Those were great words to me. Helped me protect him but not be
overly protective, etc. I'm a bit worried about his Mt. Kilaminjaro climb
this summer but his doctors have cleared him and at 23 he makes his own
decisions. My prayer is that the rigor of the climb does not send his
auto immune stuff into high gear.

I remember reading Amy's posts about Aidan (I can't believe he's seven
already) and being so thankful Nick was a teenager and not a baby. I'm
sure the grief is the same but the daily logistics are much more
difficult with a little one. We prayed that Nick would be able to go to
college. He's now graduated and working on a masters degree. He's an
incredible young man - focused and diligent - and I think his disease has
given him a maturity my other sons didn't have at his age. For a while I
think I thought of him as an Evan's, Antiphospholipid, Lupus patient. Now
I think of him as Nick who happens to have those things going on in his
body. We know it could change overnight but we are very thankful for the
relative calm of the last 6 years!

Denise, we're glad you found us and we'll be praying for you!

Marlene