Active 2 days agoHas Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease Discussion...Hi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow, progressive vision loss. It typically starts with difficulty...reactionsrepliesAwareness
Active 4 days agoWhat are some of the biggest accessibility challenges you face in your daily life due to your rare disease?...Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing your thoughts or experiences about accessibility in the...reactionsrepliesAwarenessWork & EmploymentCoping
Finding Peace in the Unknown: My Journey Through Pain, Purpose, and Empowerment...I believe in the transformative power of love, grace, and peace. My journey of self-discovery has shown me that in helping others find their inner strength, I also uncover more...reactionscomments
Active 6 days agoUnknown Health conditions that is so discormforting...Hi, everyone I woke up one morning to notice that I have a burning sensation on one of my legs. I thought it was a slight stuff. Over time some...reactions1replyDepressionSymptomsTreatment
Rare Diseases, Disability, and Self-Identity: I Am More Than My Condition...I didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I had before my diagnosis. When my symptoms first...reactions2comments
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...reactionsrepliesCopingAwareness
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
Anyone 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...reactions1replyAwareness
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
CMT 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...reactions3repliesCopingDepressionDiagnosis
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
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...reactions7replies
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 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
