October 25, 2011 at 8:21 pm


I wasn’t going to address you in this thread (as I have not done until now), but you keep addressing me! I welcome constructive debate. I respect opinions. But I am tired of feeling as if I’m being chastised by you when I give an opinion.

Yuehan asked a question. And in my opinion, and the reason I left the forum, is that it had to do with that time period. Yet when I voice my opinion, not taking aim at any person, you address me back by name – a couple of times. All I could think is – well, there it is – that feeling that only certain opinions count and I was being chastised for voicing mine.

I find it very telling that he chose not to share his story regarding sct until after the fact and also that he has not since posted to the forum. I’ve seen you two complement each other so many times and yet he didn’t share? And stated he wasn’t sure that he ever would? Why? But he did ask this question.

You bring a wealth of information to this forum and you are needed. But so are Alice and Yeuhan and Dick S and Pam H and With Hope and Dawn and Laurel and Jessicah and D.U. and Jim C and Lee Spurgeon and Soapy and every individual, including me. CIDP patients are a small community and we need each other.

I truly respect you as a researcher and as a parent. I think your love for your daughter shines and is why you find so many great articles to bring to the forum – you appear to always be looking for information that will help you to know what to do on her behalf. I can’t imagine how difficult it is to watch a child go through this and you have my respect, prayers and admiration in how you handle this with her.

I was not singling you or anyone else out, I just voiced my opinion in response to a question asked.

BTW – I do agree that the sct protocol will be approved by FDA – eventually. I personally just didn’t feel I had the time to wait – I continued to deteriorate in spite of the various treatments/protocols tried. I did a web search on clinical trial timelines and could only find one for the development of a new drug (not a new procedure) and found that it takes 12 years to develop and get it through FDA. I suspect this will take much longer! The clinical trial for sct for CIDP started in March 2005. It is ending Phase I and moving into Phase II (there are 4 phases) ([url][/url] – search on CIDP). By the time this gets through all phases and through FDA approval, well, I just didn’t have that kind of time! From the pm’s I receive, I suspect others here feel that same way. Additionally, once it moves into phase III, there is a control group, so you aren’t guaranteed the sct procedure at that point. Time just wasn’t on my side …

I do appreciate your well wishes and hope you appreciate mine for you and Emily.



September 23, 2008 at 9:19 pm

You yourself have said that Kevie is doing really, really well right now. He needs and deserves to have some normal time–and so do you. It is really hard to watch over someone you love who has an illness. Both you and he will benefit for the “normal kid” time, although I know very well that it will also be hard for both of you at times. I hope for you peace. Love is not limited by seeing distance–he knows how much you love him and care about him and want him safe even if he is not in eyesight. Take a really long soaky bubblebath and just celebrate in your heart the fact that you both CAN be like normal people despite all the challenges you have faced. Celebrate in this moment.
WithHope for a cure of these diseases


January 27, 2008 at 8:42 pm

May God watch over you and give you peace and freedom from pain throughout your surgery and recovery. We all are thinking of you and wishing a speedy recovery and good news.