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Why can't we have major media support?

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  • #16
    Liz2,I can appreciate where you are coming from re:Media to IC.
    I had been dx with IC 3 yrs ago and I have been lucky to be able to keep in check with meds and diet.Not saying that I do not have a flare or bad days,I do.
    Terri,has given you some good info re:IC Fund Raising for which I have active in but not lately but I will be back to help Terri
    in what ever way that I can but we need others to get involved with us.We cannot do it ourselves.
    Now back to the reason that I have replyed to this post re:Jerry Lewis' Telethon.
    I felt the same way as you until I was Dx with Ocular Myasthenia Gravis/General Myasthenia Gravis.
    This disease is one of the FORTY neuromuscular diseases that is in the Muscular Dystrophy category and the funds are shared between all of the forty neuromuscular diseases.
    Ocular MG deals with the eye and facial muscles(Ptosis...drooping eyelid,sometimes to the point of the covering the retina.
    My right eye goes to the outer part of the eye.My vision is sometimes blurry/double vision.I become very sob when walking because the diaphragm muscle is weak and sometimes a crisis may occur when you have to go to the ER(so far I have been lucky)
    The muscles in my arms,legs,hands become weak.I have fallen twice so far because I foolishly tried to do more physically then I should have been doing.I need rest frequently when I feel tired but it is hard to accept that I have this disease which may or may not put me in a wheelchair in a year or so.I will fight this.
    Now you see that all of that money does not go just to MD.
    They provide wheelchairs and other equipment that may be needed but cannot afford to pay.
    So now we need to deal with IC and bring it forward to the Public.Any ideas are welcome but we have to realize also that this country is in a crisis and the media is now focusing on that.But we will keep trying!!
    I pray for peace and one day we will be able to eradicate all of the diseases with possibility through Stem Cell Research.
    To everyone "United We Stand,Divided We Fall"
    prayers and gentle hugs to all with Chronic Illnesses. delores [email protected]


    • #17
      I was wondering the same thing about Oprah, as many shows as she does, You would think she would try to help us This disease is very degrading physicllay and mentally. [quote] <hr></blockquote>


      • #18
        Pamela Sue Martin of "Dynasty" had IC, and although I didn't see it, she was on TV about it. That's what I read somewhere, anyway. Karla


        • #19
          Bumping This Up! Please Sign This Petition!!!!

          I just now saw this petition to help fund IC research. I hope everyone sees this and will sign it too. My husband, mother, and myself have all signed it, and I will also ask everyone else I know to sign this as well. It only takes a moment, but it is so important for all of us! Thanks, Amy
          Last edited by ihurttoo; 04-08-2006, 06:50 PM.