Active 7 days agoPatient of HHT and Mom of child with HHT...I was diagnosed with HHT (a rare blood vessel disorder) in 2023 after 4 years of searching for answers. My son was diagnosed a year later. I receive Feraheme iron...reactions3replies
Active todayAwake but trapped...I’m awake, fully aware that I cannot move. No idea how long it will last? Will I stop breathing? Nobody home for the dog to alert, so I lay here,letting...reactions6replies
Active 8 days agoA Nauseating combo of disorders from birth only to worsen 14 years later...So Being born with the combination of ADHD, Autism and Tourette syndrome was bad enough only to have injury after injury then a tonsil removal surgery at 5 years old...reactions1reply
Active 8 days agolichen sclerosus ...I was having TERRIBLE itching in my genital area. i would explain my problem. they would say i must have vaginal infection. or yeast infection. no,no ,no. there is no...reactions1reply
Healthcare navigator specializing in rare diseases...I’m a physician-turned healthcare navigator specializing in rare diseases. Visit my website and blog at maryrodriguezmd.com...reactionsrepliesHealthcare TeamTips & AdviceNewly Diagnosed
Managing Overstimulation as a Parent...Overstimulation occurs when sensory input overwhelms an individual's ability to process and respond appropriately. For medical caregivers and families, overstimulation can be triggered by the constant sounds, sights, and activities...reactionscomments
10 Year old with medical mystery...Good 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...reactionsreplies
Active 8 days agoLife with Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis...Hello, 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...reactionsrepliesCopingTips & AdviceDiagnosis
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 ...reactions4repliesSymptoms
Building Your Child's DMD Care Team...Caring for a child with Duchenne muscular dystrophy (DMD), a condition that makes muscles weaker over time, will likely involve a team of different doctors and therapists. This is called...reactionscomments
Aunauthorized people try to get your medical information...Hello, 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...reactions1reply
Ancestral inbreeding...As 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...reactionsreplies
FATTY LIVER CANCER...MY 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...reactions3repliesHealthcare Team
Having a disease without a name ...Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off...reactions1replyTips & AdviceTreatment
Please help my wife, she has a disease that is difficult to diagnose...Symptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head and eye sockets. The pain lasts for about...reactions1replyTreatmentSymptoms
Practical Tips for Managing Day-to-Day Life With DMD...Living with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a very important role in helping your child live as fully and comfortably...reactionscomments
Active 4 days agoFeeling pure psychological discomfort after being on medication...Hi everyone! I am currently on Effexor, Seroquel and Risperidal. I have been on Effexor since Janauary 2024, Risperidal since March 2024, and Seroquel since November 2024. I have been...reactions4repliesDiagnosis
