Active yesterdayWeird disorder that is causing a lot of pain and discomfort...I need help looking for a place to start researching whatever medical condition that has me bedridden almost all day and night. For some reason I experience varying amounts of...reactions1reply
Overcoming Infusion Anxiety for People With Primary Immunodeficiency (PI)...Living with primary immunodeficiency (PI) means your body has trouble fighting off infections. This is because your immune system, which is supposed to protect you, does not work as it...reactionscomments
The Fight for Empathy: Living with Klippel-Feil Syndrome...I was born with Klippel-Feil Syndrome (KFS), which means I have a cervical fusion and other often related issues. My fusions are C1-skull, C2-C3, and C6 or 7 to T1...reactions1comment
Active yesterdayHas 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...reactions2repliesAwareness
Active 3 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...reactions2repliesAwarenessWork & EmploymentCoping
Understanding Primary Immunodeficiency (PI)...Primary immunodeficiency, or PI, is a group of chronic disorders, including many rare diseases. These diseases are caused by problems in the immune system that are present at birth, although...reactionscomments
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
Unknown 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...reactions6comments
OPLL ossification of posterior longitudinal ligament ...Does anyone else have OPLL? Ossification of the posterior longitudinal ligament....reactionsrepliesHealthcare Team
Active 5 days agoUnexplained 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
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
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
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
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