Filters

Degos

I am a 40 year old Irishman who was diagnosed with Degos Disease in 2007. I would like to take a little paragraph to express… Continue reading Degos

Read full story

My journey with Pseudoxanthoma Elasticum

My ophthalmologist first noticed ‘an unusual appearance’ on my retinas back in 1994 and referred me to the local hospital for a more in-depth check… Continue reading My journey with Pseudoxanthoma Elasticum

Read full story

Recovering from Guillain Barre Syndrome

It was 1990, when i became severley ill with what i now know as Guillain Barre Syndrome.I was a Mummy of 2 kids and only… Continue reading Recovering from Guillain Barre Syndrome

Read full story

Life with IIH/PTC

I have been struggling with “migraines” for almost 9 years. A few years back I noticed weird things happening with my vision. By the end… Continue reading Life with IIH/PTC

Read full story

AS, DM and ILD

I have a rare disease. It is called Anti Synthetase Syndrome with Dermatomyositis and Intersitial Lung Disease. This disease is a rare autoimmune disease which… Continue reading AS, DM and ILD

Read full story

tarlovova cysta

Volám sa ANNA mám 52 rokov . Moje dlhoročné trápenie,nočné budenie ,ležanie v bolestiach ,ked vám už ani lieky nezaberajú a hlavne ten pocit,že moja… Continue reading tarlovova cysta

Read full story

“Karah”

On July 23. 1995 our daughter Karah was born . The doctors told us that she had a genetic disorder, DNA testing was conducted. Three… Continue reading “Karah”

Read full story

Dego’s disease – malignant atrophic papulosis

Diagnosed June 2013 – Degos disease is an extremely rare vasculopathy that affects the lining of the small and medium veins and arteries, resulting in… Continue reading Dego’s disease – malignant atrophic papulosis

Read full story

Road to CDKL5 disorder diagnosis

Diagnosed: October 2011 at age 7 “For the longest time I had thought she was autistic with a seizure disorder.” Tia was born five days… Continue reading Road to CDKL5 disorder diagnosis

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!