A close new CIDP case.
AnonymousJuly 10, 2006 at 2:46 pm
I have put this on the UK site.
I am a CIDP contact person for the UK GBS Support Group. In the post on Saturday was a referral for a lady living only half a mile – 800m or so – away! Given the UK CIDP incidence (new cases) as between 100-200 per year then that was remarkable. Able to visit husband and son, who had done the referral online, in the morning. They were very impressed by the group’s web site, the CIDP information – [URL=”http://www.gbs.org.uk/chronic.html”]http://www.gbs.org.uk/chronic.html[/URL] and now the efficiency and speed with which the referral had gone through.
Heard the lady’s story, supplied more information and gave support and encouragement.
Then visited the lady at our local hospital during the afternoon. She is in a wheelchair as she is paralyzed to knees. Has had IViG so far.
It was a delight to be able to give support face to face. She was very pleased. More usually my contacts are by e-mail or phone.
Actually I had one only 6 miles away 4 years ago. I thought that was remarkable. We are still in regular contact as his continuing experience is similar to mine as far as sensory damage and being effected by mini-low pressure changes and extra pain are concerned.
AnonymousJuly 10, 2006 at 9:07 pm
Although I live in southern Virginia, I was in a hospital in Philladelphia. There was a lady named Marge who came twice to see me. It was a hardship for her to visit as riding in a vehicle was painful for her. How kind of her to visit me, and we got along so well. It was so comforting to speak with someone with the same disease. I have no contact with her as her hands were affected, and she can not e-mail. If there were someone in my local hospital, I’d go visit in a minute. I have just found a neuropathy support group where there is an other person with C I D P. Keep up the good work !
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