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Welcome to Inspire!
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Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
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How my disease has changed my life
Share your story with other community members.
What is a Rare Disease?
- By foreverinbluejeans · New reply yesterday at 12:46 am
- 18 replies
- In the United States of America, the Rare Disease Act of 2002 defines rare disease strictly according to prevalence, as "any disease or condition that affects less than 200,000 persons in the United States ...
Meds that help Cramp Fasciculation Syndrome
- By jupiterjane · New reply November 5, 2009
- 25 replies
- I have been dealing with Cramp Fasciculation Syndrome for several years now. I have been on countless medications and have had IVIG treatments and nothing seems to be working. Please, if you have this ...
Living with Stiff Person Syndrome
- By 1955-53 · New reply November 5, 2009
- 36 replies
- I was diagnosed this past May with SPS. I am in the denial and grief stage of accepting this disease. I was elated to have a diagnosis at first but then the honeymoon was over quickly. With one episode ...
Kienbock's disease
- By jeepers · New reply November 4, 2009
- 4 replies
- I would like to know if anyone has this disease and has had to have surgery. I have a lot of questions about a partial wrist fusion. Can anyone give me any info on their problems post surgery ...
A "wake up" call to my soul
- By tmichaelroche · Posted November 4, 2009
- 0 replies
- I really appreciate everyone's comments, suggestions and inspiration. This is a great web site. I am severely depressed. My Psychologist (have been with him since 1994) was informed of my suicidal thoughts ...
Conn's Syndrome and Kidney pain
- By nikki_G · New reply November 4, 2009
- 28 replies
- I was wondering if anyone one else with Conn's syndrome gets extreme kidney and flank pain. I have regular bouts of extreme pain and spend quite a bit of time in hospital but the doctors here do not know ...
ollier's disease
- By ILOVEMYGRANDKIDS · New reply November 4, 2009
- 30 replies
- my dauthder has olliers disease,when she was born she was fine she looked fine she was a beautiful baby, she was born in 1977 . when it was time for her to star walking, she would sit down on the floor ...
Systemic Mastocytosis and other Autoimmune Diseases
- By Djkmom · New reply November 4, 2009
- 16 replies
- I have to practically live in a bubble. When I get sick, I get REAL SICK! I was diagnosed almost 2 years ago... I would like to talk to people that are going through the same thing that I am. From what ...
Do you feel Rare diseases get mainstreamed?
- By whtmtnspirit · New reply November 3, 2009
- 11 replies
- I don't fit in.. even when i'm with others disabled, i don't fit in.... I need wheelchair accessible housing.. not because i'm in a wheelchair, but to allow that safety zone around me so i can have involuntary ...
I'm losing my hair!
- By faithinthenight · Posted November 3, 2009
- 0 replies
- Has anyone experienced losing their hair from Prednisone? I have experienced about a 40% hair loss recently. The amount that comes out daily continues to surprise and alarm me. Been on and off Prednisone ...
tarlov cyst, tethered cord syndrome
- By Jocarol · New reply October 30, 2009
- 22 replies
- Has any had surgery for the above syndromes, and what are the recovery times and what is expected as far as physical therapy ...
stiff person syndrome
- By stevebro · New reply October 26, 2009
- 31 replies
- Anyone around diagnosed as having Stiff Person Syndrome, an autoimmune neurological disorder? Does anybody have experience with treatment other than valium as medication? I really only hear from a british ...
ER's - I felt like a fool
- By dianes123 · New reply October 25, 2009
- 5 replies
- Good Morning All, I have Adhesive Arachnoiditis and it's getting pretty severe especially in my legs effecting my ability to walk and lately just loosing control and having my legs give out on me anytime ...
RND
- By CountItAllJoy · Posted October 24, 2009
- 0 replies
- For those struggling with this disease, aka RSD or CRPS ...
Diabetes Insipidus
- By MsLauren86 · New reply October 23, 2009
- 43 replies
- Sometimes referred to as "The Other Diabetes," Diabetes Insipidus (DI) is a rare endocrine condition characterized by excessive thirst and urine volume. DI can result in one of two forms: nephrogenic ...
CMTC
- By kittycat71263 · New reply October 22, 2009
- 15 replies
- Hi My Son also has Cmtc.It is mainly on his left leg. But does have a small amount on other leg, scrotum one tiny place one back and on his eye lid! I am also trying to educate my self. My son was born ...
information on Isaac's Syndrome
- By Theresa3 · New reply October 21, 2009
- 7 replies
- Hi everyone, I am a student in Massage therapy school and we had an assignment for class. It was to find a muscle disease and write about it and determine what manipulations to use on this person. First ...
Second Attempt Tarlov Cyst Surgery
- By Stephanie3084 · New reply October 19, 2009
- 11 replies
- I am new here, so I'm not sure where to start. To make a long story short, I am a 43 year old woman who was diagnosed with a very large Tarlov cyst (about the size of a lemon) in my sacral spine in July ...
systemic Mastocytosis
- By slu · New reply October 19, 2009
- 3 replies
- My husband has been diganoised with this disease 6 yrs ago. The Dr. really didn't know how to even treat it. Finally after many changes of Dr.'s we went to the Moffit cancer center. The Dr. we got was ...
Diseases that noone talks/knows about
- By MCADMOM · New reply October 18, 2009
- 9 replies
- My son has Medium Chain Acyl CoA Dehydrogenase Deficiency (MCAD) and noone knows what I'm talking about. My son's condition is life threating and noone can help me because this condition is hidin. Things ...
