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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.
Kari and MSK Kari and MSK

Kari's fight against Medullary Sponge Kidney

Dianna, Medullary sponge kidney, United States, June 12, 2018

Kari got sick when she was 17.  She was complaining of a lot of pain.  When the Drs ordered CT scans they realized her kidneys were full of kidney stones.  I took her to see doctors at UVA, Johns Hopk...

Tonya Tonya

This too shall pass

Tonya, Tarlov cyst, United States, June 9, 2018

I began having lower back and leg pain with numbness in 2016. I went to a local ER and the Dr got aggravated with me because I refused to take medications without a diagnosis. He basically said I was ...

Angel Angel

My Little Angel

Raechel, Schizencephaly, Philippines, June 8, 2018

Hi I'm Raechel , I have a daughter who battles Schizencephaly and Seizures, among my 3 children, my youngest got this rare disease, though it's heartbreaking seeing her crying out loud and I even don'...

Growing up with Pigmented villonodular synovitis

Growing up with Pigmented villonodular synovitis

Vickie, Pigmented villonodular synovitis, United States, June 3, 2018

When I was about 10 I tripped a fell against an old rusty motorcycle. I ended up with a two inch gash across my left knee. My mom took me to the doctors house where he stitched me up on his diningroom...

Smith-Kingsmore Syndrome (mTOR gene)

Smith-Kingsmore Syndrome (mTOR gene)

Alessandra, Macrocephaly-intellectual disability-neurodevelopmental disorder-small thorax syndrome, Italy, May 25, 2018

Hi, I have a 4 year old boy with Smith-Kingsmore Syndrome (genetic mutation of the gene mTOR). This mutation is causing him general developmental delay and autism. It seems there are less than 10 case...

My Journey with Mesothelioma Cancer

My Journey with Mesothelioma Cancer

Virgil, Mesothelioma, United States, May 24, 2018

As a young man I worked hard to earn a living. I didn’t mind that it was back-breaking work tearing down old buildings on a demolition crew; I just wanted to make money to have a better future. I didn...

Choose hope Choose hope

When life becomes a pain in the neck

Prateek, Isolated Klippel-Feil syndrome, United States, May 18, 2018

My name is Prateek Kumar Shukla. I am a second year medical student at Kent State University - College of Podiatric Medicine. My journey towards becoming a foot and ankle surgeon is one shaped by my c...

Jody Jody

The light

Jody, Ocular Melanoma, United States, May 14, 2018

Ocular Melanoma (OM), two words I had never heard together before September 2009. The purpose for sharing my story is to educate people about Ocular Melanoma and offer hope to newly diagnosed patients...

A rare and creeping neurological disorder

A rare and creeping neurological disorder

Romano, FOSMN syndrome, Netherlands, May 8, 2018

About six or seven years ago I went to see my doctor about a twitch on the left side of my face. She didn't know what it was, and since it seemed to fade I paid no mind to it any further. About four y...

I’d Never Heard Of ALD/AMN Until The World Collapsed Around Us

I’d Never Heard Of ALD/AMN Until The World Collapsed Around Us

Satish, Adrenomyeloneuropathy, India, April 27, 2018

I had no idea there is such a thing as ALD/AMN though I am now aware.My son Rohan, had started working after completing his BBA and within a few months he just could not walk. Around this time four ye...

To young for this ? So I thought

To young for this ? So I thought

Celine, Interstitial lung disease, United Kingdom, April 21, 2018

Well they say 3s a lucky number not for me I'm 47 yr old f had this disease around 2 half to 3yr isherwood since I stopped smoking 20 a day after having problems got sent to see a few professionals re...

Beautiful Connie after her open heart surgery and before the lung diagnosis Beautiful Connie after her open heart surgery and before the lung diagnosis

Connie's Cause

Becky, Congenital pulmonary lymphangiectasia, United Kingdom, April 14, 2018

Hi please can anyone help, as a family we are desperate to find help for my 7 month old niece Connie Warren. She has been diagnosed with CPL - Congenital Pulmonary Lymphangiectasia a rare lung disease...

Is this ALL I am?

Is this ALL I am?

Wendy, Small fiber sensory neuropathy, United States, April 11, 2018

I decided to add my experience here after reading Brooke's story. It has been almost fifteen years since the onset of Small Fiber Sensory Neuropathy in late 2004. The disorder is prefaced "Idopathic",...

My left foot My left foot

Progressive Pain

Laurie, Ledderhose disease, United States, April 3, 2018

About ten years ago I felt a painful lump in my left foot. I ignored it thinking I must have stepped on something. Over time I did a bit of research and discovered I have Ledderhose disease. I had my ...

Quentin Quentin

Quentin, My Love

Sarah, Congenital adrenal hyperplasia, United States, March 26, 2018

On December 8, 2017, weighing at 7 lbs. 8oz., my son Quentin was born with a full head of hair. A mothers love is a mothers love. It was love at first sight with my daughter and now with him as well. ...

Save my sight ... save my life ... Too late im now Blind Save my sight ... save my life ... Too late im now Blind

Learning to live in a new world ... BLINDNESS

Chanel, Choroiditis, United Kingdom, March 15, 2018

Learning to live in my New World,At just 43 yrs old I lost my sight within 1 year. From needing glasses to a white cane.From Having a career to giving it up. After an agnosing yr of 52 pills a day Ste...

I Knew I Wasn't Just Rude

I Knew I Wasn't Just Rude

Gabby, Misophonia, United States, March 7, 2018

For as long as I can remember, like, legitimately since I was a small child, I've been extremely bothered by the sound of eating. My little brother was always a loud eater, and it seemed like I was th...

Wheels - my life nowadays depends on wheels.... Wheels - my life nowadays depends on wheels....

Cured of cancer, but damaged by the treatment...

Neil, Radiation-Induced Lumbosacral Plexopathy, United Kingdom, March 4, 2018

My story starts in the summer of 1976, when I was just 21 and diagnosed with testicular cancer. Surgery and six gruelling weeks of radio therapy followed, and then followed routine check-ups weekly, t...

Happy for sight every morning

Happy for sight every morning

Dennis, Ocular Melanoma, United States, March 3, 2018

My story started in June 2014. My wife and I always take vacation around our anniversary and this year was no different. I had scheduled a routine eye exam with my optometrist because I was out of con...

Combo of some surgeries Combo of some surgeries

Struggle with Ehlers Danlos Syndrome

Corne, Ehlers danlos syndrome, fibromyalgia, Psoratic arthritis, South Africa, March 2, 2018

Dear Reader I am 31 years old and have had 38 operations to date due to my condition or the side effects of either the condition, or the medication. I suffer from Ehlers Danlos Syndrome, Psoratic Arhr...


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