Spreading the word about CIDP
I still remember an article I read in the Neuropathy News published by the Neuropathy Association. Essentially, the article was an appeal to neuropathy patients. It went something like this, ‘…how can we go before Congress and request funds when most of you won’t even join our organization? If we don’t have a strong membership base we cannot convince Congress there is a problem.
This is what I remember, not actually what was written.
What can you do?
1. Join up, get a membership-
“[I]ABOUT US: OUR PERIPHERAL NEUROPATHY MISSION
Our mission focuses on helping and healing people with peripheral neuropathy. Because our mission encompasses providing neuropathy awareness, education, support, advocacy and research, our activities support our mission as follows:”[/I] there is more, lots more please go to the website.
[url]http://www.neuropathy.org/site/PageServer?pagename=AboutUs_History[/url]
In the past, some people on this forum have given me the impression that they do not believe CIDP is under the auspices of peripheral neuropathy. Really?
See this on the main web page under the Neuropathy tab and then Types of Neuropathy-
[url]http://www.neuropathy.org/site/PageServer?pagename=Type_Immune[/url]
For more information about peripheral neuropathies including CIDP and immune-mediated neuropathies or about The Association and Support Groups in your local area, please call us at 212-692-0662 or write to us at: [email]info@neuropathy.org[/email]
What can you do?
2. Do what homeagain has repeatedly said- get involved. Contact, and then visit each member of your State and Federal congressional delegations. Repeatedly.
What can you do?
3. Make sure you go for evaluation at a Teaching Center. During your treatment you will serve as the test patient for numerous ‘resident’ doctors to evaluate you and make their report to the big Cheese. Finally, you will be seen by the big cheese. In this way you directly contribute to the learning curve of big medicine.
I recall at Mayo clinic, during my testing, one Specialist-Professor-Surgeon asked my permission to photo my right hand stating, “…sorry, we cannot do anything about your case. But, we can use your case to teach the next generation of doctors.”