Filters

I have Scleroderma and Pulmonary Hypertension

I was dx with Scleroderma on June 1996. It took a long time to dx. I was dx with PH in 2013 of April. I… Continue reading I have Scleroderma and Pulmonary Hypertension

Read full story

Pseudomyxoma Peritonei (PMP)

I had felt unwell for a good while. I have ME and so I put it down to that. I’m 54-is it the menopause? I… Continue reading Pseudomyxoma Peritonei (PMP)

Read full story

Nesidioblastosis

After 30 yrs of weight issues and hypoglycemic and hyperinsulinemic episodes, I learned through a endocrine researchist that I had non-insulinoma pancreatogenic hypoglycemic hyperinsulinemia, which… Continue reading Nesidioblastosis

Read full story

pain

My story is very short. I have been living with 3 diseases for years 2 of them are rear one is Hydroxyprolinemia & Ehlers-Danlos (Fibromialgia… Continue reading pain

Read full story

Progressive Supranuclear Palsy

My name is Craig Smith and i live in Adelaide South Australia. On February 12th 2013 at the age of 83 my Dad Jeff passed… Continue reading Progressive Supranuclear Palsy

Read full story

Adhesive Arachnoiditis

I have developed adhesive arachnoiditis after having a tumor and an arachnoid cyst removed from my spinal cord, because they were compressing on the spinal… Continue reading Adhesive Arachnoiditis

Read full story

Living with Schnitzler’s Syndrome

My Name is Kate-Lynn Bagley. I’m 30 Years Old and i’ve been ill for 4 1/2 Years. I have an Ultra-Rare Disease called “Schnitzler’s Syndrome”… Continue reading Living with Schnitzler’s Syndrome

Read full story

Our angel Alex

August 18 2000 the nursery nurse brought me my baby boy and said to me I have held a lot of babies but there’s something… Continue reading Our angel Alex

Read full story

How Many Rare Diseases Can Affect A Person’s Life?

My story starts when I was around 6 years old I was diagnosed with Legg-Calvé-Perthes Disease a rare disease of the hips. I had to… Continue reading How Many Rare Diseases Can Affect A Person’s Life?

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!