FeaturedBiggest challenges you face in your current journey?Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...Reactions0reactionsComments63 repliesCaregivingCopingTips & Advice
FeaturedWhat fills your cups on hard days?Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...Reactions0reactionsComments112 replies
Active yesterdayFATTY LIVER CANCERMY CANCER WAS MISSED ON MY XRAYS 1 1/2 YEARS AGO AND NOW I HAVE A DEATH SENTENCE IS THERE ANYTHING THAT COULD HELP ME Pro Long OR BEAT THIS...Reactions0reactionsComments2 repliesHealthcare Team
Active 3 days ago10 Year old with medical mysteryGood Day Everyone My son has been sick for about 4 months. He is seeing doctors and was in the hospital more than once and still he is not beter...Reactions0reactionsComments0 replies
Active 3 days agoTraveling With a Rare DiseaseTell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...Reactions0reactionsComments11 repliesTravel
Active 3 days agoUndiagnosed insane symptoms1st time here. I desperately need help as to why I go numb and loss bodily function and become extremely dizzy if I don't have constant heat on me when...Reactions0reactionsComments16 repliesDiagnosis
Active 5 days agoLife with Rare Coexistence of Systemic Lupus and Ankylosis SpondylitisHello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis (Axial for me ). Tbh, living with...Reactions0reactionsComments0 repliesTips & AdviceCopingDiagnosis
Living with Mast Cell Activation62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I am finding out and finally knowing these words...Reactions0reactionsComments3 replies
Anyone experience this and how do we get help??My son and I started having symptoms a year and a half ago, started after a camping trip and we had a lump on different parts of the body ...Reactions0reactionsComments4 repliesSymptoms
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments69 repliesCoping
Aunauthorized people try to get your medical informationHello, My deceased brother’s ex wife contacted Mayo Clinic and my brother’s attorney trying to get access to my medical records. Has this or a similar situation ever happen to...Reactions0reactionsComments1 replies