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.
Cystic Angiomatosis

Cystic Angiomatosis

Naomi, Cystic Angiomatosis, United Kingdom, March 2, 2019

Hi,In September of last year I was incorrectly diagnosed with metastatic cancer with an unknown primary (aged 36). After multiple biopsies and a splenectomy I have now been diagnosed with Cystic Angio...

Rare Disease: Fibrosing Mediastinitis

Rare Disease: Fibrosing Mediastinitis

Dawnyell, Fibrosing mediastinitis, United States, March 1, 2019

I was recently diagnosed with this rare disorder a few weeks ago called Fibrosing Mediastinitis. Currently this condition is not curable and since it was left untreated, it has caused major complicati...

Isaac's and 3 ANES

Isaac's and 3 ANES

Juliana, ANE, Brazil, March 1, 2019

Gender: MaleAge: 6 yearsDiagnosis:  SUSCEPTIBILITY TO ACUTE INFECTIOUS INDUCED ENCEPHALITIS 3.No. OMIM: 608033 mutation in the gene RANBP2 Presence in: Heterozygosis (one copy). He already suffered 3 ...

Me Me

Art & My Life

Nur, Mucopolysaccharidosis type 4A, Malaysia, March 1, 2019

I have been diagnosed with Mucopolysaccharidosis type 4A. Art is my life. After finishing secondary school, I went to music/keyboard class, then learnt Folk Art, and I am now continuing my love toward...

Making the most out of each day Making the most out of each day

I may have a disease but this disease does NOT have me!

Liz, Idiopathic subglottic stenosis, United States, March 1, 2019

I have a rare disease that suddenly changed my life. I went to bed whole but woke up a changed mother and wife.I used to play with my kids and have all the fun. Played softball with my Lover and loved...

Interstial cystitis

Interstial cystitis

Jessica, Interstitial cystitis, United States, March 1, 2019

This is my rare disease and it causes me to urinate up to 60 times a day and it is an incurable disease!  Interstitial cystitis, also known as bladder pain syndrome (IC/BPS), is a rare chronic debilit...


My struggle with GBS

Xochitl, Guillain-Barré syndrome, United States, March 1, 2019

Hi my name is Xochitl, this is my GBS story.I always had been totally independent; I raised two girls by myself. The first tragedy in my life was when my mom died when I was about 28, it was devastati...

My experience with AIH

My experience with AIH

Sandy, Autoimmune hepatitis, United States, February 28, 2019

I am 35 years old. I have had autoimmune Hepatitis (AHI) for over 9 years. Awareness in AHI is important because some of the symptoms get overlooked. In my case, I was always tired, sleepy and not hun...

2018 2018

Life with multiple diseases

Alexandrina, Dermatomyositis, United States, February 28, 2019

Being 19 and having in total 9 illness is exhausting, I'm never truly in the driver's seat. I have a rare condition that is 1 in 3 million, there is no cure and the treatment is long, I take chemo wee...

Training at Vertical Adventures for the upcoming National Adaptive climbing competition. Training at Vertical Adventures for the upcoming National Adaptive climbing competition.

One climb at a time!

Keith, Klippel-Feil syndrome, Holoprosencephaly, pulmonary fibrosis, United States, February 28, 2019

I am an overcomer. I have multiple medical complexities that have not kept me down. Multiple doctors, teachers said there was things I would never do. And while there is somethings I struggle with I a...

Second Marathon Second Marathon


Jackie, CIDP, United States, February 28, 2019

When I was 14, I woke up one morning with a tingling numbness all over my body. Within a week, I was completely paralyzed, and unable to walk, feed or dress myself, and completely dependant upon my pa...

My Reyna Reyna My Reyna Reyna

Reynas Fight with MPSIIIA

Perriann, MPSIIIA, United States, February 28, 2019

Hello this is Reyna! She is 3 years old. Last year in May the day after her 3rd birthday, she was diagnosed with a rare fatal disease called MPSIIIA/San filippo type A syndrome. She was misdiagnosed w...

Rylan Rylan

Rylan - Rare Mitochondrial Disease Warrior

Ishani, SLC25A46, United States, February 28, 2019

Diagnosis Day February 11, 2019 Today, in honor of Rare Disease Day, I would like to share our story.  For the past 4 years, since Rylan was born, we have been in search of a diagnosis.  Two weeks ago...

Myself and my son Myself and my son

Keep going!

Julie, Hypoparathyroidism, United States, February 28, 2019

I had a complete thyroidectomy and due to scar tissue 1 parathyroid glam was removed causing the other to quit working. I have had trouble for several years getting my thyroid hormone levels regulated...

Moi, et mon mari ! Moi, et mon mari !

Apprendre à vivre un jour après l'autre !

Nathalie, Multiple endocrine neoplasia type 1, France, February 28, 2019

Je m'appelle Nathalie et je vais vous raconter mon histoire avec la NEM 1 (Neoplasie Endocrinienne Multiple de type 1). Cette maladie provoque l'apparition de tumeurs, souvent endocriniennes (mais pas...

I don't 'see' why...

I don't 'see' why...

Todd, Blepharospasm-oromandibular dystonia syndrome, United States, February 28, 2019

11 years ago I was standing in my daughter's living room, when her husband looked at me and asked: "do you need some eyedrops?" Huh? "Why do you ask?""Your blinking a lot." Sure enough, I hadn't reall...

a good moment a good moment

Sometimes its just about surviving

Hannah, Tuberous sclerosis complex, Austria, February 28, 2019

Our daughter Hannah was diagnosed with TSC when she was 2 months old. TSC causes her body to grow benign tumors in soft parts, massively in her brain. She has seizures everyday, skin signs, eye condit...

Jude Anthony at 5yrs old Jude Anthony at 5yrs old

Jude’s Journey

Amy, Hirschsprung disease, United States, February 28, 2019

Hello! I’m Jude and I have Hirschsprungs. I was born and sent home from the hospital even though I never pooped. The hospital made a mistake and that’s ok. We all make mistakes. A few days came and we...

Facing the unknown with PBD

Facing the unknown with PBD

Makenzie, Peroxisome biogenesis disorder, United States, February 28, 2019

I want to share the story of our beautiful daughter, Fynlee. I hope to share what life is like when faced with a disease you or the doctors don't know much about.My name is Makenzie, I am 23 years old...

Jessica Jessica

I have AIP, it does not have me.

Jessica, Acute intermittent porphyria, United States, February 28, 2019

My name is Jessica and I have Acute intermittent porphyria.When I was twelve, I was bitten by an infected mosquito and contracted Spinal Meningitis as well as Encephalitis at the same time. During thi...


Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.