Stories on Curt's Human Disease Website
Name of the Disease: Guillian-Barre

Author: Pat

Her Story: Briefly, our experience is that my husband still has it. When one stills "has it" that means it is no Chronic Ideopathic Demylinating Polyneuropathy (CIDP). In other words, CIDP is chronic. Guillian-Barre (GB) goes away within a year, at least most of it. It is a neurological virus that leaves one completely paralyzed. My husband was paralyzed for about a year and then had to learn to sit, stand, walk, feed himself, etcl all over again. But, it kept relapsing. So, every two weeks he gets treatments of gamma globulin that keeps him "normal" - two weeks at a time. 60 minutes did a story of the shortages ofgamma globulin a few months ago. It is scary.

Anyway, GB people normally recover. Some, when they first find themselves paralyzed (which can be an overnight experience, you wake up the next day and you are paralyzed; others it comes on a littler slower.) Some first end up on a lung machine and in intensive care for a while. The fast it comes on the quicker it goes. My husbands came on slowly over a period of 3 months. We thought it was muscle soreness, then backproblems, etc. etc. etc. Then the was completely paralyzed. That was 6 years ago. We live on permanent long-term disability. Thank goodness he bought long-term disability insurance a long time ago. Aetna Insurance is our insurance. They have tried to get out of paying his LTD; we got some legal help; they got off my husband's back; sold him to Traveler's Insurance and then Traveler's sold him to whomever they just merged with - Citicorp (I think). By the way, my husband was employed with Aetna for 23 years. There are physicians out there who have GB and their insurance has tried to get rid of them. It costs $50,000 a year for gamma globulin treatments. We have experienced "how to keep the poor poorer." But, we fight and try to help others. So that is all. My name is Pat and my husband is Ken and we have two great teenage kids - yes, great and yes they are eenagers, they are a lot of fun (most of the time). Have a good day.

And in addition from a separate email sent to Curt:

Curtis, Glad the info I sent can help your web page. If you think our story can help others you are free to use it. It's been a long battle and we are still fighting it, but some days seem so normal and wonderful as if there were no disease. So, we thank God for those. I really had a hard time when my kids were in 1st and 3rd grade for about two years. Those were the years Ken was completely paralyzed and then learning to walk, so he was rarely at home. And when he was home it was so much more extra work and even fight the insurance company for an electric hospital bed. Insurance is even worse now adays. The added stress insurance gives someone is amazing. Anyway, through all of this, today, I am working on my PhD in Counseling and hopefully I can give back what has been given to me. Good luck with your web site and how you are helping people. Pat

 

Her Recommendation to find out more about this disease:

AOL NetFind, just type in Guillian-Barre and you get a lot of people who write letters about their experiences with Guillian-Barre.  

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