Tell your story!

Share your photos, videos and your experiences!

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.
FEARLESS!

FEARLESS!

Renée, United States, February 18, 2016

April 8th, 2011 began my journey of going blind. Out of the blue that day at work, I felt off-balance and my eyes felt weird. I rubbed my eyes to make it go away, and had no vision in my right eye. Co...

Life with Lymphedema

Life with Lymphedema

Dara, United States, February 18, 2016

I was 13 years old the first time I felt the onset of lymphedema. At the time, I had no idea what lymphedema was, and neither did anyone else around me---no one knew what it was that ailed me. I knew ...

Combined Cobalamin Defect

Combined Cobalamin Defect

Sofia, Australia, February 18, 2016

I was Diagnosed with Combined Cobalamin Defect when I was 8 years old and have been a Non Paid Patient Human Research Subject for Children's Hospital Camperdown /Westmead and Westmead Adult hospital ...

wegeners

wegeners

Dorothy, Ireland, February 18, 2016

Aged 46 I was diagnosed with Wegeners, a rare autoimmune disease which effects the lungs, respiratory and kidneys. (Vasculitis). It took doctors 6 months to diagnose me but was relieved to get answers...

Living with a rare disease

Living with a rare disease

Lorinda, United States, February 17, 2016

Coming from a family of six siblings, we have three rare diseases and I am the one blessed with all of them. fortunately there are treatments available but there is no cures as of yet. There are good ...

HypoGal My Story With Sheehan's Syndrome, Relapsing Polychondritis

HypoGal My Story With Sheehan's Syndrome, Relapsing Polychondritis

Lisa, United States, February 17, 2016

HypoGal Shares Information about Disability Insurance, Sheehan’s Syndrome and Relapsing Polychondritis (R.P.) HypoGal, My Story My Story; most of my life I have never considered what the words, ...

My Story with Mesotehlioma

My Story with Mesotehlioma

Heather, United States, February 17, 2016

When I was younger, I would wear my dads work jacket around the house to do outside chores. My dad worked in construction and it was common that he would come home covered in dust. Unbeknownst to us, ...

Remaining Silent Does Not Raise Awareness

Remaining Silent Does Not Raise Awareness

Amanda, United States, February 17, 2016

My story is about my hero my daughter Savanna Grace Thompson who is 3 , she is such a beautiful gift that was sent by God and I thank God for her and my other daughter Aubrie Nicole Thompson who is 7 ...

COCKAYNE SYNDROME. .SCOTTY CAHILL

COCKAYNE SYNDROME. .SCOTTY CAHILL

Pat, United States, February 16, 2016

Our second child was born may 2,1973 he was normal in all ways except he had bilateral cataracts he had his first surgery at 6 months and second one a year later. At first he was diagnosed with cerebr...

Mastocytosis

Mastocytosis

Marina, United States, February 16, 2016

At age 5 I began to get little red spots on my. After biopsy of them, I learned I had urticaria pigmentosa , also known as up. By 11 I was having these terrible spells where I would vomit, cramp all o...

2 rares in my family

2 rares in my family

Kara, United States, February 16, 2016

After my mom died of one the most fatal and rare cancers called IBC (inflammatory Breast Cancer)...my Dad was diagnosed with a rare blood cancer called ET...2 rare cancer diagnoses in a short span--

Little man, big heart

Little man, big heart

Sandra, United States, February 16, 2016

Our little boy Spencer was diagnosed at birth with saggital craniosynostosis and later on with hypochondroplasia. Craniosynostosis is when the sutures in the skull close prematurely affecting the grow...

SO FRUSTRATED

SO FRUSTRATED

Adriana, United States, February 15, 2016

Hello i'm a 23 year old female that was diagnosed with NON classical CAH back in June 2015; this disease is pretty much ADRENAL INSUFFICIENCY; body lacks cortisol the hormone needed to make the body f...

911

911

Avielle, United States, February 15, 2016

In September I took vacation from work, but while on vacation I was sick. I went to the dr and they said I tested positive for mono. I had such a bad headache and muscle soreness. I continued to talk ...

Virginia

Virginia

Jane, United States, February 15, 2016

I am 50 years old thought my life was going to be getting better and all the bad was in the past diagnosed with FMD at the age of 48 blockage in my left kidney ,blockages in legs ,arms and two in the ...

MSUD CF Warrior

MSUD CF Warrior

Ashley, United States, February 15, 2016

Our son, Johnny, is 10 months old. He was diagnosed with Maple Syrup Urine Disease and Cystic Fibrosis when he was 4 days old. He is the only person in the United States to have both these diseases si...

One person, one story. Two sides of the same coin

One person, one story. Two sides of the same coin

Samy, Colombia, February 15, 2016

One person, one story. Two sides of the same coin. This is how the story began... With a disease, yes, with a disease. Specifically with the diagnosis of a disease. Then came the journey that thi...

My biliary atresia story

My biliary atresia story

Millie, United Kingdom, February 13, 2016

Millie's Story Written by Millie on 30/06/2015 14:10 My name is Millie, I am currently 13 years old, I was born on the 16th February 2002 and this is my story of living with biliary atresia. I ...

Lightenings stroke me more than once but I am alive and kicking.

Lightenings stroke me more than once but I am alive and kicking.

Fabiana, Brazil, February 12, 2016

I am a Medical Doctor graduated at University of São Paulo, Brazil; and a Desmoid and Dermatomyositis patient myself. I had a lower back desmoid tumor in 1999. It was amputated and recurred a year l...

Rylee Marie, CDKL5 Warrior

Rylee Marie, CDKL5 Warrior

Aubrey, United States, February 12, 2016

Rylee is 8 (almost 9) years old and she was diagnosed with CDKL5 at the age of 5 after endlessly searching for answers. She suffers from seizures, low muscle tone, global delays, serious sleep issues ...

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