Active 8 days agodiagnosis...what are some tips with managing fap syndrome...reactionsrepliesDiagnosis
Andersen-Tawil Syndrome Diagnosis: Full Circle...In 2009, my baby brother collapsed while running in a track meet. He was 16, and I already worked as a pediatric sub-acute home health nurse. The diagnosis? A sudden...reactions3comments
Can glaucoma develop even if your eye pressure is normal?...Yes. This condition is called normal-tension glaucoma, and it occurs when the optic nerve is damaged despite having eye pressure within the normal range. The exact cause isn’t fully understood...reactionsrepliesCaregiving
How can OCT and retinal photography reveal eye diseases before you even notice symptoms?...OCT (Optical Coherence Tomography) and retinal photography are advanced imaging techniques that allow eye doctors to see beneath the surface of your retina in incredible detail. They can detect microscopic...reactionsrepliesAwareness
Myasthenia gravis...My 2 year boy baby suffering droopy eyelid and we have taken acytylcholinestrease receptor test and observed 1.08 value.though RNS negative, tensilon test negative MRI also negative. Please help me...reactions1reply
What is Retinitis Pigmentosa, and how does it affect vision over time?...Retinitis Pigmentosa (RP) is a rare, inherited eye disease that affects the retina, the light-sensitive tissue at the back of the eye. It causes the gradual breakdown and loss of...reactionsrepliesSymptoms
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 3.5 years ago. Since she has become very...reactions1replyCopingCaregivingFriends & 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, in an easier way. I hope you will...reactions1replyTreatmentSymptomsAwareness
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. It started with a blood clot in his...reactionsrepliesResearch & Clinical TrialsAwarenessDiagnosis
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. 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
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, progressive vision loss. It typically starts with difficulty...reactions2repliesAwareness
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 your thoughts or experiences about accessibility in the...reactions2repliesCopingWork & EmploymentAwareness
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
Active 8 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...reactions2repliesDepressionSymptomsTreatment
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
