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Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
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.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Discussion topics
Getting a diagnosis
With rare diseases, this can be a lengthy and frustrating process. Was it for you?
Masto symptoms.. hot skin but no fever?
- By katherine67 · New reply 2:27 pm
- 3 replies
- I'm working on getting a diagnosis for my 3yo daughter, Hannah. One of the things I think I'm noticing with her is that she feels very hot during a flare, but sometimes shows no fever (or it fluctuates ...
All 339 discussions...
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 ...
All 140 discussions...
Financial issues
Discuss the impact of having a rare disease on your financial health. Have you found resources that others should know about?
Life after Tarlov cyst surgery
- By irma09 · New reply October 30, 2009
- 26 replies
- My daughter had TC surgery done in K. City, on May 19th 09 by Dr Fiegenbaum. I think he is one of the handful of Nueros in the country who knows how to do the surgery. Most neuros told her that Tarlov ...
All 27 discussions...
Tips for caregivers
What have you learned about caring for someone with a rare disease that might be helpful to others?
having adrenalectomy tommorow
- By nikides · New reply yesterday at 10:18 am
- 1 reply
- Any heads up on what to expect after adrenalectomy ...
All 41 discussions...
My child and school
Is your child's school district supportive? Discuss your experiences, and share tips on how to partner effectively.
My childs school is partially helpful
- By afields90 · New reply November 5, 2009
- 13 replies
- The principal and vice principal of my son's school have been somewhat helpful in my son's condition, he misses a lot of school, but they worked on getting something fixed out so I don't have to get a ...
All 10 discussions...
Finding emotional support
Are you getting the support you need? If so, how did you find it and what would you recommend to others?
Conn's syndrome (hyperaldosteronism)
- By jacque · New reply 12:34 pm
- 97 replies
- I would like to know someone else's story about their experience with Conn's syndrome. What were their symptoms before they were finally dignosed, and what is their treatment (medication or surgery ...
All 191 discussions...
Finding a doctor
People with rare diseases sometimes have trouble finding a doctor. What was your experience?
Lumbar pain
- By FrustratedInNJ · New reply yesterday at 5:11 pm
- 3 replies
- Hi.... I'm a 46 year old female. My issue started in 2005. I started having back pain in the lumbar region. The first step was an x-ray which showed mild disc space narrowing at L-5 and S-1, consistent ...
All 67 discussions...
Sibling issues
Chronic illness can create issues among siblings. Discuss your family's experience and share your suggestions.
Ocular Motor Apraxia
- By French-mum · New reply October 27, 2009
- 4 replies
- Hello, my son who is now 6 months old was recently diagnosed with ocular motor apraxia. He sees perfectly well but can not follow moving objetcs with his eyes. In order to follow them, he has to move ...
All 8 discussions...
My disease has no treatment
How do you cope and what suggestions might you offer to others in the same situation?
Looking for those with mastocytosis
- By HelenD · New reply 2:22 pm
- 30 replies
- Comfort to all. I learned back in June that I have systemic mastocytosis. According the pathologist that performed my bone marrow biopsy I am the 27th confirmed case here New Mexico. Though I feel I have ...
All 93 discussions...
Medicare, medicaid and medical insurance
Share your experiences, tips and advice with others.
Stiff Person Syndrome and insurances
- By mikeysps · New reply yesterday at 12:08 pm
- 2 replies
- I was diagnosed with Stiff Person Syndrome in 2001. Since becoming disabled, it seems like I have had to play doctor, researcher, insurance commissioner, political activist, etc., etc. So much for disability ...
