FeaturedActive yesterdayBiggest 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...Reactions0reactionsComments62 repliesCaregivingCopingTips & Advice
FeaturedActive 6 days agoWhat 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 yesterdayAunauthorized 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...Reactions0reactionsComments5 replies
Active 5 days agoUndiagnosed still but something is wrong Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but admit there’s something but tell me they can’t...Reactions0reactionsComments4 repliesCopingDepressionDiagnosis
What helps you avoid burnout or chronic illness fatigue?Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...Reactions0reactionsComments22 repliesCopingMental Health
How Do You Cope?Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...Reactions0reactionsComments38 repliesCoping
Ancestral inbreedingAs a decendent of lots of inbreeding, I have many expressed recessive "rare" traits. None have proven fatal or longevity-altering (yet), but the anomalies make life and especially medical treatment...Reactions0reactionsComments0 replies
FeaturedDietary ChangesHi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...Reactions0reactionsComments11 repliesCopingDiet & NutritionNewly Diagnosed
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments67 repliesCoping
FATTY 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...Reactions0reactionsComments1 repliesHealthcare Team