Rare Disease and our Similarities

Hi Everyone,

I am sure at times we all feel lost with Rare Illnesses. Please know that even though we may have different Disorders we are all here for support or understanding. Many Members may be Care Givers and Loved Ones, or Members with illness and stress,fear & loneliness. I have three Rare Disorders & am a Moderator on a few Forums. Anyone that needs to talk or just know there is someone out there that understands. Please respond to this Discussion or send me a Message. They all go to my email. I promise to get back with each and everyone. This is a very lonely journey at times. Please just know you are not alone. That is what's great about Ben's Friends we all are a family of sorts, thrown together by unfortunate circumstance and come out needing others that have been in the same trenches.

Tracy Z,

Thank you for this post. I have just been diagnosed with Ehlers Danlos Syndrome with hypermobility. Not many medical professionals have much experience with EDS so it's not been an easy road. There is an EDS group here on Ben'sFriends but we don't have enough members yet to have a discussion forum. Thank you so much.

Susan W


It is so great you founds us. We actually have many EDS Members on the Chiari Malformation Forum. www.charisupport.org

I know you don't have Chiari but that is fine. The EDS group has 39 Members and it is amazing and was started by an incredible 15 year old. Please join there also. The EDS Group is http://www.chiarisupport.org/group/eds-and-chiari


Tracy Z.

Thanks Tracy, this community is full of support : )