Community Conversations: Sharing Our Experiences With Rare Diseases

Every rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses to dealing with treatment and insurance barriers, our community finds connection in our forums every day.

These conversations are an invaluable source of knowledge and support, no matter where someone is on their rare disease journey. To bring more attention to important topics in the community, and to highlight some of the important topics in our forums, we've gathered some of our most popular discussions.

In each of the topic sections below, you can enter your own response to the prompt in the white box and click "Share my response." Or click on "View all responses" to read advice and stories from fellow community members and Health Leaders.

We want to get to know you!

We value learning about our members and making them feel safe and supported. We have also seen people meet others with their same disease for the first time in the comments section. If you feel comfortable, consider introducing yourself and sharing about the rare disease that impacts you.

Diagnosis dilemmas

One unfortunate shared experience of rare disease warriors is the road to a diagnosis. Many members report having misdiagnoses, not being believed, and needing to see multiple doctors to finally figure out what is causing their symptoms. We know what you are experiencing is real and are here for support along the way.

Alliebroussard12: "I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong... What do I do? It’s getting hopeless and taking a toll on me mentally."

Gibby: "Looking for help with my condition after seeing multiple doctors the past 3 years and the last being a neurologist. It’s a mystery as to what is going on."

Sharing the struggle

Living with a rare condition comes with many hurdles. The lack of information and treatment can impact daily life. Many of our community members have had to make changes to accommodate the demands of their health needs or limitations. How have you adapted since getting a diagnosis?

CommunityMember8908624: "I'm just curious about how people navigate this journey well. What are your biggest challenges and support needs? Where do people go to get support? What actually makes a difference?"

CommunityMemberff2029: "I'm new on here, hoping to have some people to chat with...I'm dealing with 6 autoimmune diseases +2 rare diseases+ am 66 years old+most days are very hard for me. I hope to get to find out how others here make it thru the hard days."

What questions do you have?

Ready to share an experience with being diagnosed or coping with your rare disease? Just want to vent? Our community is here for you. Start a discussion by entering a question or sharing an experience in the box below!