Lymphangioleiomyomatosis (LAM)...I am diagnosed with Lymphangioleiomyomatosis or LAM & asthma. Looking for others that have the same thing....reactions3repliesCoping
Feeling isolated and alone with a severe rare disease...My husband and I have tried to do many things to support our daughter diagnosed with metachromatic leukodystrophy, rare terminal brain disease...reactions3repliesCaregivingCopingFriends & Family
VEXAS - In Honor of Max Gyllenskog Part 1...Here's part 1 of a series I'm working on to try to help other people understand this disease as I'm learning it...reactions1replyAwarenessTreatmentSymptoms
VEXAS - In Honor of Max Gyllenskog Intro...VEXAS Syndrome: Spread the Word When Max Gyllenskog first began experiencing significant health issues, the puzzling array of symptoms left everyone baffled...reactionsrepliesAwarenessDiagnosisResearch & Clinical Trials
Weird 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...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...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...reactions1comment
Has 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...reactions3repliesAwareness
What 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...reactions4repliesAwarenessWork & 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...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...reactions1comment
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...reactions4repliesDepressionSymptomsTreatment
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...reactions6comments
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...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...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...reactions7repliesAwareness
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)...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...reactionscomments
