AnonymousApril 18, 2009 at 10:51 am
Hello to all,
I hoep that you are all having a “good day” as we all have our shar of tough days. I have recently been amazed by friends and family who have come together and are throwing a benefit for me in my time of need. A few weeks ago I apparently crossed a boundary on this site unintentional. I was very excited about the lastest news and I was notified that asking for help on this forum is forbidded. I have said I’m sorry and hope to move on. My excitment was because I now know that I have a future in speaking out and gaing awareness for GBS and CIDP. My future intentions are to help others with neuropathies. I have a website being built currently and plans to increase awareness through many channels. For those of us challenged financially I have a sincere desire to make it my life’s purpose to help. My goals are true and my passion is unwavering…I no longer listen to the nay-sayers. If anyone is interested in working with me on a grassroots level to gain attention for our battle with GBS and CIDP please pm me and we’ll talk soon.
I’m very hopeful and its been a while since I’ve felt that way
Good luck to you all.
AnonymousApril 19, 2009 at 1:54 pm
Let’s see–because of the CIDP, I have my Primary Care Doc, my neuro, my rheumatologist who is in charge of my chemo, my pulmonologist, my urologist, my neuro-ophthalmologist, my nephrologist; all of which I see monthly or every two or three months. I have to be admitted to the Oncology Floor of my local hospital one day every month. Every few months, they schedule another test, as the CIDP invades my autonomic system, and they send me to another “gist” specialist. And I take a handful of pills three times a day.
Yeah-my finances go to my health problems, as it does for many people here on the forum. And dealing with the red tape of insurance companies, it took me 14 months of aggrivation just to get my electric wheelchair.
So, yeah-it’s not a good idea to ask people here for monetary help.
When I saw your post–I just shrugged it off…it’s over with.
The problem with what you mentioned, is that;
ONE-it is a rare disease: 7 in 100,000 people get MS, (a well-known disease and much supported for research), 2 in 100,000 get ALS, (another well-known disease because a famous baseball player had it, was the disease “Tony” had in the “Valley of the Dolls”, and is well supported; then we get to CIDP of which it is 1 in 100,000. There are many rare diseases that because they are rare–there is little support, and not a lot of research being done on it. There is a very long list with the NIH that try to get doctors/researchers to do research on rare diseases.
TWO-Did you every hear of a famous person having CIDP? Or anyone in a famous person’s family? Jerry Lewis is a famous supporter of MD. Many famous people have MS, (it was just announced a few weeks ago, Montel Williams has MS). As I mentioned above, about ALS. And many other diseases have a famous actor or actress heading a campaign about their “pet” disease. CIDP–nope–never heard ANYONE mention it…
THREE-Even when there is a special research going on for CIDP, such as the current program at Northwestern in Chicago, where they are researching using stem cell transplant for CIDP, there is NO FUNDING-not even from the government. You can be accepted into the program, but, since insurance companies will not pay on anything considered an “experimental procedure”, that means you have to have the $250,000.00 yourself, to pay for the procedure. A procedure I consider very beneficial, but only for wealthy people–very discriminating.
Unfortunately, it is a waiting game…what famous person will finally get CIDP?
I never heard of this disease until I got it. Maybe we need to shorten the tongue twister to just “Demylenating Polyneuropathy”? I think long after I’m gone, will support or knowledge of this to the public come. Even your friends and family are probably just calling it, “a rare disease MAC has…”.
…some day, it will come…
AnonymousApril 26, 2009 at 3:43 pm
Interestingly enough…here’s the first famous person I’ve heard of getting CIDP, William “The Refrigerator” Perry from the Chicago Bears. It’ll be interesting to see what this does for awareness and possible additional research (ideally stem cell).
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