Share your experiences, tips and advice with others.
- By camae · May 13, 2008
- 15 replies
- Hi, I've written about my son before, he's 23 yrs old and has been sick with HSP since he was 21. He suffers greatly with Purpura, Petichiea, joint pain and swelling and has experienced bleeding in his ...
- By pickledfairy · May 2, 2008
- 0 replies
- I am interested in talking with anyone who was already on TPN for gastroparesis before they became eligible for Medicare. I become eligible in July and have been told that I do not meet Medicare's qualifications ...
- By webjunkie · January 21, 2008
- 1 reply
- Hi; I heard the report last week about the Cholesterol Drug which the FDA says doesn't do what is is advertised to do. The drug company knew about it for two years & basically sat on the info. As a group ...
- By ShyGirl · September 17, 2007
- 1 reply
- Hello; I am back once more after a rough few days of summer. I recieved in the mail a letter stating they know I have medical issues and the letter listed health plan providers. Oh yes they did stated ...
- By walter_comer · September 2, 2007
- 2 replies
- So, tell me about disability. My blog explains why. But, short and sweet, some things have turned South and concern me for my safety and others ...
- By WhataBreeze · August 20, 2007
- 2 replies
- Good Evening NORD Rare Disease Community: You may have noticed my Blog previously to this posting. Those of you who remember me from when this Community Forum first started last year may know of my single ...
- By elainesproles · August 19, 2007
- 2 replies
- My son has galactosemia, an genetic error of metabolism. Does anyone out there have it? Is there anyone from Texas that knows how to get help from the government such as medicaid or disability? This is ...
- By heathersmom · June 3, 2007
- 5 replies
- Anybody out there have ssi with medicade? Do you all have problems? Does anyone feel as though our insurance companies should have to cover pre-existing problems? I do...... I wrote my state representative ...
- By msnormaj · November 6, 2006
- 1 reply
- I recently began treatments(JUNE-06) for my disease-CIDP.I along with my Doctor am pleased with the results of the treatments.Ino longer am experiencing the constant pain and weakness in my legs and hands ...
- By Rebecca · October 10, 2006
- 1 reply
- I live in New York City. I would appreciate if anyone can let me know about support goups in the New York City area. Rebecca Arce easez2@verizon.net ...
- By KathyKay · September 22, 2006
- 3 replies
- What kinds of Medicare RX insurance plans are the best for the cost of Copaxone. I currently have Regence, Blue Cross/Blue Sheild of Oregon, which does not cover Copaxone, but also have "Asuris" as my ...
