Filters

Scleroderma at bay

Diagnosed 12 yrs ago with Scleroderma & polymiositis overlap. Until very revently was able to work as Flight Attendant, despite sclerodactyly, digital ulcers, pulmonary hypertension… Continue reading Scleroderma at bay

Read full story

Team Clem vs Pulmonary Fibrosis

My husband Clem has Pulmonary Fibrosis. We did this climb on Feb. 28. to spread awareness about Pulmonary Fibrosis here in Las Vegas. We climbed… Continue reading Team Clem vs Pulmonary Fibrosis

Read full story

Love

This i Love 20 years old (his the gay whitout the glasses). He was born whit mitodeaseas. The man with the glasses is Mattias and… Continue reading Love

Read full story

The Time I Never got Better

It was the first week in November of 2014, a fantastic event had just taken place, as my capoeira Mestre, just returned from a year… Continue reading The Time I Never got Better

Read full story

Scleroderma

At the age of one I was diagnosed with scleroderma and as I’ve grown older I’ve been diagnosed with many other diseases due to my… Continue reading Scleroderma

Read full story

Scleroderma

At the age of one I was diagnosed with scleroderma and as I’ve grown older I’ve been diagnosed with many other diseases due to my… Continue reading Scleroderma

Read full story

Thea Marie

In 2015, our granddaughter, Thea Marie was born. She was perfect, beautiful, and such a happy baby. We had no idea beneath the beautiful exterior,… Continue reading Thea Marie

Read full story

Dealing with adult Cyclical Vomiting Syndrome

My 28 year old son was first diagnosed with this rare affliction about 7 years ago. The name, and the acronym, is a bit unfortunate-… Continue reading Dealing with adult Cyclical Vomiting Syndrome

Read full story

Free Spirit

I tell you my story life . My name is Elena Pomana from Romania. I’m 27 years old and I’m suffering from a rare disease… Continue reading Free Spirit

Read full story
What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

Share your story

Share your colours

Join the community. Help us build awareness. Share your photos, videos and experiences!