A possible documentary about GBS

    • Anonymous
      December 28, 2006 at 11:06 am

      Hello all:

      I have been approached by the producer of Discovery US about the possibility of a medical science documentary on GBS. It would be a one-hour episode on ONE patient only and the ordeal that he/she faced. It would be a great opportunity for GBS to get some recognition from the public and even from healthcare professsionals. The producer is looking for just the right patient.
      The criteria for this person are as follows:
      1. The person has to be able to tell his/her story in front of cameras and give permission for doctors, other healthcare professionals, family and friends to discuss the case.
      2. There has to be some mystery/detective work in diagnosing – perhaps initially misdiagnosed, having a doctor that never saw a GBS patient before, or a need to go to another hospital.
      3. It has to have been a severe case – respiratory involvement, etc.
      4. Treatment used – or lack thereof
      5. Some other details that make the story intriguing.

      Initally, the producer will call all the people whose story I send to him. He will call/interview all of them and then send a few names to his director for discussion.

      If you would like to be considered and meet all the criteria above, email your story, with your name, city/state, email address and phone number. My email is b.katzman@gbs-cidp.org

      Sorry, only US people can be considered for this round.

      Barbara Katzman
      Associate Director
      GBS/CIDP Foundation International

    • Anonymous
      December 28, 2006 at 1:26 pm

      Barbara,

      This sounds so fantastic! I do not meet the criteria but am just thrilled for our community. Good Luck.

    • Anonymous
      December 28, 2006 at 1:37 pm

      I don’t meet the requirements either, but am thrilled about this exposure.

      Please keep us posted on if this happens and when the show will be.

      Dennis

    • Anonymous
      December 28, 2006 at 2:00 pm

      I think it’s wonderful that there hopefully will be a documentary done about GBS. I also do not fit the requirements, but we sure need to have information put out there!

    • Anonymous
      December 28, 2006 at 2:19 pm

      I don’t meet requirements either, but am sure someone on our site knows someone who does meet requirements. When will this come off?

      Peggy

    • Anonymous
      December 28, 2006 at 2:32 pm

      Hi Peggy:

      It may not come off at all – depends on whether we can find a suitable (in their eyes) patient on which they can focus.

      Barbara

    • Anonymous
      December 28, 2006 at 9:24 pm

      Anyone reading all of the posts realizes that there are so many kinds of patients among us. I think picking one patient is giving the wrong idea about GBS. Should they tell the story of the person who couldn’t get the IVIG for 2 months while the insurance company debated whether or not to cover it? He finally decided not to get it and used yoga and homeopathics. Or do we pick the person who was helped by the IVIG or the person who wasn’t or the person who got aseptic meningitis from IVIG? All of this I learned from our posts.

    • Anonymous
      December 28, 2006 at 11:03 pm

      I think it is a good idea. I’m not a candidate because I had no respiratory problems and my doctor knew what it was right away. I was fortunate that he had seen cases as an intern. I would like to be a part of the insurance part. It was frustrating how the insurance wanted immediate success or they would not pay. I was working so hard at therapy and always hoped insurance would give me more time. They need to know that GBS is getting better slowly.

      Good luck
      Caroline

    • Anonymous
      December 29, 2006 at 1:14 am

      pity it is us only as otherwise i probably fit the criteria!