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Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
If Only it Were a Nightmare

If Only it Were a Nightmare

Kristi, United States, February 26, 2015

" Sometimes I see 2 of Daddy ", Maggie said at the age of 9. 3 days later we were told she had 6-12 mths. to live. This after undergoing 3 years of fertility treatments just to have a child. She was a...

Desmoid tumor

Desmoid tumor

Molly, United States, February 26, 2015

I was diagnosed with Desmoid in 2012, a rare fibrous tumor. It is inoperable as per experts. Started on oral chemo for an year with couple of meds. The tumor kept growing and I almost lost the functio...

searching for a match

searching for a match

Theresa, United States, February 26, 2015

my daughter Clara destiny was diagnosed at the age of eight with a rare chromosome disorder 18p12q. I had no idea she had one until her neurologist noticed large cafe Aulaits on her body. I thought sh...

Different

Different

Wendy, Canada, February 26, 2015

I have Myotonic Dystrophy. Discovered at age 29 when I had cataract surgery. Something very odd for a 29 year old. It causes muscle weakness, muscle pain, chronic fatigue and many other problems. Appe...

The Long Road - My Diagnosis Story

The Long Road - My Diagnosis Story

Molly, United States, February 26, 2015

One month ago today I received the call. I immediately took note of the time 5:32pm, noticing it odd for a doctor’s office to call so late. “You did an excellent job diagnosing yourself. The biopsy re...

The purple monster

The purple monster

Amanda, United States, February 25, 2015

My name is Amanda Boston and I am 27 years old. When I was 24 I started having abdominal pain and a rash on my hands, chest and face. I went to dermatologists and emergency rooms when the pain got rea...

Long road to MPA diagnosis

Long road to MPA diagnosis

Patricia, United States, February 25, 2015

Over twenty years of joint pain and debilitating headaches lead me from rheumatologist to rheumatologist, shuffling from one prescribed medication (that was frequently pulled off the market for some h...

Interstitial Cystitis / Painful Bladder Syndrome

Interstitial Cystitis / Painful Bladder Syndrome

Susana, United Kingdom, February 25, 2015

I'm 28 years old and have recently been diagnosed with interstitial cystitis also known as painful bladder syndrome. I spent 4 years in pain and constantly and always looking for the nearest loo befor...

I love being Me!

I love being Me!

Isabella, United States, February 25, 2015

Isabella was born 12.27.07 with a rare chromosome disorder Xq28 deletion and many anomalies. Cognitively, she's like a 3 yr old. Isabella has overcome many obstacles in her 7 yrs of life. On 09.27.13,...

Gangliosidosis type 1 infantile form

Gangliosidosis type 1 infantile form

Andy, United Kingdom, February 25, 2015

Our daughter Skye was born with gangliosidosis type 1. Skye wasnt diognosed until she was 10months old after a suffering from a chest infection. We got to spend 18 months with our beautiful daughter ...

My Awareness Campaign in Pakistan

My Awareness Campaign in Pakistan

Haji, Pakistan, February 25, 2015

My life dedication for rare disease in Pakistan regarding "ATAXIA" Please see my contribution in this regards by clicking following link thanks http://www.dailymotion.com/video/x26v5u4_world-this-m...

Arthrogryposis Multiplex Congenita

Arthrogryposis Multiplex Congenita

Gavin, United States, February 25, 2015

Hi, my name is Gavin . I am 16 months old and 1 in 3,000. I have a rare joint condition called Arthrogryposis Multiplex Congenita. It’s commonly called AMC because it’s hard to pronounce and spell. Af...

Living with Interstitial Cystitis

Living with Interstitial Cystitis

Samantha, United Kingdom, February 25, 2015

When I was in my teens I ALWAYS seemed to have a Urinary Tract Infection, or at least the symptom of one. I would be given antibiotics anyway and sent off. For a few days the symptoms would subside bu...

NANS Deficiency

NANS Deficiency

darlene, Canada, February 25, 2015

Like Nolin's Facebook page to follow his new disorder. Thanks, Darlene

Alaina's Story

Alaina's Story

Amanda, United States, February 25, 2015

Our little girl is Alaina she is 21 months old and has a rare disease called Arthrogryposis. It effects less the 200,000 people in the US. She has it in her upper and lower part of her body! She also ...

Living with Syringomyelia

Living with Syringomyelia

Stephanie, Canada, February 25, 2015

I was diagnosed with this very rare spinal chord condition in 2010 following a MRI. At the time I thought I had a herniated disk in my neck and that I was going to have a minor surgery and get on with...

never give up! Tsc disease

never give up! Tsc disease

manuela, Italy, February 25, 2015

I am 37 years and for 2 years i discovered i am affected by TSC or Sclerosis Tuberosa. I live in Palermo and I already had 3 surgery one for a benign tumor in my uter, but for mistake the considered i...

Osteogenesis imperfecta

Osteogenesis imperfecta

Kadie, United States, February 25, 2015

My son, Harlan, has ostegenesis imperfecta, type III/iv. He is the most amazing boy ever. He was a spontaneous mutation with no prior carriers in either my husbands nor my family. At 14 mths old he is...

Stiff Persons Syndrome

Stiff Persons Syndrome

Janet, United States, February 25, 2015

I am a 44 year old mom of two teenagers and wife to an amazing husband. I live with a disease that affects one in one million people called Stiff Persons Syndrome. I have had the disease for about 11 ...

One Amazing Mom

One Amazing Mom

Elizabeth, United States, February 25, 2015

I was born September 7, 1969, with a rare birth defect called Arthrogryposis Multiplex Congenita. It is a birth defect of the upper and lower extremities. It deals with the muscle and joint. It normal...

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