starting a support group

    • Anonymous
      July 31, 2007 at 9:11 am

      Does anyone have experience in this? I put a call into the hospital where i live because they have so many different meetings for ppl with illnesses. I thought about putting something in the paper but that could open unwanted problems with my phone lol. I know we have alot of ppl with gbs/cidp in my area i just want to see if we can help each other. For instance, my shortage of ivig. Stronger in numbers is my theory!! I have learned that through everyone here helping me get through this. Any idea’s as always from anyone would be the best!:D

    • Anonymous
      July 31, 2007 at 11:22 am

      Hi Lisa:

      Please check with the Foundation. We already have 6 chapters of the GBS/CIDP Foundation in Texas. Each one is led by a knowledgeable and caring person.

      Barbara Katzman
      Executive Director
      GBS/CIDP Foundation International

    • Anonymous
      July 31, 2007 at 11:33 am


      I have looked at which liaisons are nearest to you, was hoping there would be one within a few minutes from you. However, I found that the nearest liaison from you would be in Lorena, just over 100 miles away, and the next would be in Duncanville, also over 100 miles away. HOWEVER, having said that ……. I know that I speak with people who are not in my immediate vacinity all the time, and maybe these liaisons would have some names or people in your surrounding area that you could speak with.

    • Anonymous
      July 31, 2007 at 11:34 am

      Lisa, I didnt see barbara’s post as I was looking up locations on mapquest – didnt mean to duplicate.

    • Anonymous
      August 2, 2007 at 2:37 am

      sadly i was told that kentucky is one of two states in the US that does not have a support group or liasion. anyone able to provide me with more information on starting a group in kentucky. i live in louisville which is the largest city here and centrally located.
      i am also a RN, so i feel that i would have a lot to contribute.
      i am currently starting on imuran from cellcept and starting another loadind dose of ivig and solumedrol.

      last month i had a cannon catheter place for plasmapheresis, in less than 30 days i had line sepsis and sick wit a temp of 104.8. the nurses whom were performing my PPE treatments are dialysis nurses. I am also a dialysis nurse, so needless to say, my catheter consistantly had sterile/aseptic technique with it whenever i had to change my own dressings, however i still developed a pseudomonias infection. healthcare has turned into my own private blackhole.