August 10, 2009 at 12:41 am

As Ken has said, CIDP in itself is usually not fatal. But I have been on this forum for 7 years & have lost many dear friends to this illness. I did not meet most of them in person, but kept in touch either via email or more oftentimes on the phone. Most people with severe cases cannot type a lot of posts; they are fortunate to get one post out. I always targeted those who posted with the most severe cases, not the relapsing remitting form who did well with IVIG, nor those who had the very slow progressive forms (sorry Dick).

Some of you might remember Leon, a pastor who passed at age 59 with a very severe case of CIDP. He had twin 5 year old grandsons who he wanted so much to play catch with. The last time we spoke he could only move his shoulders minimally; he died of respiratory failure that winter. Then there was Sandy from New Zealand, whose husband in his early 40s had a terrible case & she was on the forum a lot asking for help. He passed when their two children were quite young. My friend Robert, an orthopedic surgeon from New Jersey (never wanted anyone to know he was a doctor.) He was in his late 50s & ended up getting an infection in his IV. We always talked about getting together to “walk” some day when he finally could again walk. He was such a wonderful man who helped me out so much when my husband was going through two back surgeries. Terry, who I could only call at certain times in the evening, as he could only lie in bed all day & I had to call when his wife was home so she could bring the phone to him. Brandy, one of our most prolific posters for years, lost her dear husband Frank in his late 50s to CIDP. Dear Doc David, who helped out so many of us here on the Forum. He was such a boost to so many of us at our own worst times.

I could keep recalling people we have lost, but these are the worst cases, most of you do quite well. But we should never forget those who we have lost & never treat this illness lightly. I have two dear friends right now who are in bad shape, Tony, an ex-marine who has suffered with a bad case of CIDP since age 35 & is now 46. He has had over 350 treatments, but to no avail. I just got a letter from him in the mail saying “Help,” My old roommate from Mayo named Barb who has never left the wheelchair or regained the use of her hands. Please say a special prayer for them, that they might get just some slight improvement. I say a prayer for all affected by this cruel illness every night & for all of those I have loved & lost through the years…
God Bless, Pam