Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

Forums

Read conversations, start a discussion, and connect with others about rare diseases.

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...

Lymphangioleiomyomatosis (LAM)

I am diagnosed with Lymphangioleiomyomatosis or LAM & asthma. Looking for others that have the same thing....

Recently been diagnosed

With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it was and the biggest challenge has been getting...

How to get diagnosed?

Hello. I have a rare disease no one has heard of. I've tried to get into a rare disease clinic but they require a diagnosis. How do you get a...

Romantic Partnerships

Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?...

Urgent Help Needed: Undiagnosed Condition in 8-Month-Old with Severe Symptoms

Hello everyone! I'm posting on behalf of a friend in China whose 8-month-old son has been battling severe, unexplained symptoms since he was just 2 months old. These symptoms include...

Undiagnosed with neurological symptoms and multiple misdiagnoses

Hi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About a year ago, I started randomly slurring my...

My disease

I have pulmonary fibrosis. I was diagnosed in 2001.. and told I would be dead 'by this time next week '!! I was coerced by the Dr. involved.. into having...

Doctors can not figure out wife's medical issue

After over a year of testing they still can not figure out what is wrong. My wife had had roughly 8 cat scans, erg, colonoscopy, gastric emptying, mri, biopsys and...

Bones in head constantly keep feeling like they swelling.

For past 12 years I have had the sensation in my head that my skull is swelling.I also have a extremely itchy scalp and my face is constantly burning with...

Categories

Select a category to find topics that interest you.