Filters

TMAU for life

At almost 43 I have had TMAU since childhood though it was only diagnosed 3 or 4 years ago. It has destroyed every aspect of… Continue reading TMAU for life

Read full story

Keep Fighting

Hey! My name is Francisco, 20 yr. old male and I’ve been living with this disease or whatever it is since I was maybe about… Continue reading Keep Fighting

Read full story

Invisible Disease

At 16, I almost died due to hundreds of P.E.’s surrounding both my lungs & from a major DVT in my left leg. Three days… Continue reading Invisible Disease

Read full story

06.02.2015 Yes I am still alive ,today is my Birthday

Today is my 36th birthday. Three years ago, I was diagnosed with a rare disease – “Pulmonary Hypertension”. When this happened, I didn’t believe that… Continue reading 06.02.2015 Yes I am still alive ,today is my Birthday

Read full story

A girl living in a “cushie” world

In October 2008, I was diagnosed with Cushing’s Disease, a rarely diagnosed endocrine disorder involving a hormone-secreting tumor of the pituitary gland. I’d been sick… Continue reading A girl living in a “cushie” world

Read full story

Alone and depressed

I suffer from achalasia these past 5 years and it has stolen my life. I cant eat meals now only soft blended watery foods not… Continue reading Alone and depressed

Read full story

Line’s Dream

Hello My Name is Line I’m 8 years old and I have RTS (Rubinstein-Taybi Syndrome) . I was diagnosed with RTS when I was 4… Continue reading Line’s Dream

Read full story

Life can win

Life can win The disease came upon me quickly and unexpectedly. Like a storm with no warning. Within a month, after a cold, I started… Continue reading Life can win

Read full story

Thank GOD I’m NOT Alone.

In March 2009, I was diagnosed with F.A.P/Gardners Syndrome. On Sept 10, 2009, I had my entire colon removed along with the majority of my… Continue reading Thank GOD I’m NOT Alone.

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!