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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?
Isaac's syndrome
- By Lynn2 · New reply 5:34 pm
- 1163 replies
- Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...
All 357 discussions...
How my disease has changed my life
Share your story with other community members.
ollier's disease
- By ILOVEMYGRANDKIDS · New reply November 17, 2009
- 31 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 ...
All 141 discussions...
Financial issues
Discuss the impact of having a rare disease on your financial health. Have you found resources that others should know about?
How To Pay For surgery
- By ilene123 · New reply 10:39 am
- 2 replies
- There are so many like myself that find themselves unable to pay for surgery. I have hyperaldosteronism and need the surgery but cant afford it.I have been out of work in N.C. since dec,2008.Have any ...
All 28 discussions...
Tips for caregivers
What have you learned about caring for someone with a rare disease that might be helpful to others?
HEREDITARY SPHEROCYTOSIS
- By csmp · New reply November 15, 2009
- 67 replies
- Does anyone know of any new research or treatment for HEREDITARY SPHEROCYTOSIS? My husband, our two children, and now our grandchild has this blood disorder ...
All 42 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 11, 2009
- 14 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?
Tarlov Disease--Third Surgery
- By Leabell · New reply 10:59 am
- 11 replies
- I am just curious if anyone out there has had more than 2 surgeries and if so what does your doctor say about them? I am about to have my third surgery to remove my cyst. It has been three years since ...
All 194 discussions...
Finding a doctor
People with rare diseases sometimes have trouble finding a doctor. What was your experience?
Porphyria in Indiana
- By MsLila · New reply November 18, 2009
- 1 reply
- I am currently in the process of searching for a physician in Indianapolis or the central Indiana area with experience managing the care of patients diagnosed with Acute Intermittent Porphyria. Currently ...
All 68 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?
What do you do when the dr. says we have done all we can
- By pinhead2009 · New reply 5:07 pm
- 5 replies
- Yeah, Can you believe that. They said we are at the end of the road....nothing we can do for you, Gave me the name of a pain management Dr..... I want to SCREAM.... The pain is unbearable. Trigeminal ...
All 98 discussions...
Medicare, medicaid and medical insurance
Share your experiences, tips and advice with others.
Mik's HSP
- By camae · New reply November 15, 2009
- 10 replies
- Some of you will remember that I had first posted about my son Mik a few years back. I haven't posted regularly because it's been very hard living with his illness and we have had to deal with depression ...
