With rare diseases, this can be a lengthy and frustrating process. Was it for you?
- By Lynn2 · New reply 12:01 pm
- 521 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 ...
Share your story with other community members.
- By joshua · Posted November 22, 2008
- 0 replies
- My disease has changed my life in many ways,I hate to say it but it was for the better before i was living like i had nothing to live for now i do its funny how that works isnt it ...
Discuss the impact of having a rare disease on your financial health. Have you found resources that others should know about?
- By dizzybee · Posted October 24, 2008
- 0 replies
- I am in no way affiliated with any of the links/names I am about to post. I just happened upon them. Transportation Assistance: Air Charity Network The Medical Transportation Reimbursement Fund (the MOTOR ...
What have you learned about caring for someone with a rare disease that might be helpful to others?
- By KimberlyD0 · New reply 1:44 pm
- 15 replies
- My Daughter is 6.5 months old. When she was born her right leg and foot was covered in dark blue almost black vains. We were told she had a venus malformation and it would go away. When she was 2 months ...
Is your child's school district supportive? Discuss your experiences, and share tips on how to partner effectively.
- By kelsi6 · New reply October 19, 2008
- 2 replies
- My daughter just got a diagnosis today, but it all started a week ago, on saturday she had pain in her ancle, then sunday the rash came up and her ancle was swollen but her knee hurt, now today i get ...
Are you getting the support you need? If so, how did you find it and what would you recommend to others?
- By accessn12 · Posted November 27, 2008
- 0 replies
- Hello, I'm just kind of wondering if anyone else out there has been diagnosed with RTH. I find it kind of hard sometimes not having someone else I can talk to about what it's like. It took me 48 years ...
People with rare diseases sometimes have trouble finding a doctor. What was your experience?
- By mishap · New reply November 18, 2008
- 2 replies
- I got hurt at work and my symptoms got worse. Didn't know I even had this till my Dr. took a MRI after my fall. My comp case was going down the tubes because their doctor said he could find nothing to ...
Chronic illness can create issues among siblings. Discuss your family's experience and share your suggestions.
- By Novice911 · New reply October 24, 2008
- 4 replies
- Has anyone heard of Schilder's Disease? I've had 3 brothers (approximately 2 years of age) die from this and would like any information at all (especially genetic information). I am very concerned about ...
How do you cope and what suggestions might you offer to others in the same situation?
- By MichelleBelle · New reply November 18, 2008
- 5 replies
- For the last year and a half I have tried a few treatments for fibromyalgia (All of which have had horrible side effects). My mom met a woman at my brothers football practice who has fibromyalgia, and ...
Share your experiences, tips and advice with others.
- By fannyfarfunkle · Posted November 21, 2008
- 0 replies
- Has anyone ever successfully had medicaid pay for the genetic testing for ehlers-danlos type IV. I hear that usually it has to be paid by credit card in advance and that doctors don't have any luck getting ...
