OPLL ossification of posterior longitudinal ligament ...Does anyone else have OPLL? Ossification of the posterior longitudinal ligament....reactionsrepliesHealthcare Team
Unexplained Night sweats ...I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un explained night sweats. I have had all kind...reactions4repliesCopingAwareness
Adult Onset Still's Disease...I would like to find others that have been diagnosed with this. I would like to connect with others that have struggled with this...reactionsrepliesDiagnosis
Active yesterdayAnyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?...I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...reactions4repliesAwareness
Taking Control of Your PI Treatment at Home...Living with primary immunodeficiency (PI) can feel like a life managed by the schedule of your infusions. For years, intravenous immunoglobulin (IVIG) was the primary treatment, requiring people with PI...reactionscomments
Demystifying Primary Immunodeficiency Treatment...Primary immunodeficiency (PI) is a group of more than 400 chronic disorders, including many rare diseases, in which part of the body's immune system is missing or does not function...reactionscomments
MSL2 syndrome...Hi everyone, at first sorry for my english I didn't write for a long time and I live now in Germany. Our 7 years old son has after cca 5...reactions1replyDiagnosis
Active 7 days agoCMT type 4c1, hEDS, PsA, Fibro, Ichthyosis ...I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test. I paid for my own dna...reactions4repliesCopingDepressionDiagnosis
I’ve had eye muscle weakness and droopy eyelids from Myasthenia Gravis , Has anyone else experienced vision problems due to a rare disease?...I’ve experienced vision issues linked to a rare condition — specifically eye muscle weakness and droopy eyelids, which were early signs of Myasthenia Gravis in my case. It started with...reactionsrepliesSymptoms
The Diagnosis Journey: Primary Immunodeficiency (PI)...A long and difficult road may face people with primary immunodeficiency, also known as PI. It is not always easy to diagnose someone with PI. This article will help you...reactionscomments
Patient 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
Awake 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...reactions16replies
A 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...reactions10replies
lichen 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 TeamNewly DiagnosedTips & Advice
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...reactions1reply
Life 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
