Keidi, Multiple Hereditary Exostoses, Canada, August 6, 2019
Hi my name is Keidi and this is my story with Multiple Hereditary Exotoses. (MHE)It all started when I was 2 when my mom started to notice bumps all down my spine. When my mom took me to my pediatrici...
Mara, Dermatomyositis, United States, August 3, 2019
I was diagnosed with diabetes when i was 11 im now 36 and 4 years ago was diagnosed with Dermatomyositis. Life has been hard my A1c levels are high but my Myositis is on remission due to IV infusions ...
Onawu, CADASIL, United States, August 3, 2019
To be honest, I feel like an alien because I have had 8 incidents since 2016. Thank God I have no brain damage. I have been toldthat my problems are complicated. I was finaly diagnosed with cadasil in...
Dinithi, Trimethylaminuria, Sri Lanka, August 2, 2019
I am suffering from body odour issues since 2014. I was 12 back then. I somehow managed my life till 2017 I think been a child helped me.I was 16 in 2018 that's the year I found about the condition c...
Nitnem, Stiff person syndrome and related disorders, India, July 31, 2019
Imagine a life in which the brain runs twice the normal speed, with an uncertain focus jumping onto various things ; while your spine and limbs feel as stiff as rock, hands continuous ly trembling, wh...
Scarlett, Visual snow syndrome, India, July 23, 2019
I was 7 years old when i first suffered this disease . I was scared of the floaters and dots i see . As i grow up i begin to develop my interests towards various rare diseases . Then i found a word v...
Yolanda, Primary ciliary dyskinesia, United States, June 28, 2019
My name isYolanda, I am in my early 30’s and living with PCD. I was born prematurely and started my life in ICU at 9days old. I struggled to breathe and stay healthy the first several years of my life...
alesia, Undiagnosed, United States, June 22, 2019
I was 10 years old when it all started, I woke with a migrain that made it so I could not lift my head without it throbbing intensely. No one believed me and told me that I was "too young" .. next cam...
Amanda, Thoracic outlet syndrome, United States, June 7, 2019
Coexisting with pain is indescribable, indefinable. Pain doesn't have a face or a physical identity, and it won't produce an image on an X-ray.I was involved in an accident in February 2018 where anot...
Nauwarah, Primary ciliary dyskinesia, Pakistan, June 7, 2019
'I am not ready for this day' is the first thought when I wake up in morning. I was 7 months old when my parents went to UK for a short visit, I fell from table and suffered a minor head injury, lucki...
Annette, Idiopathic granulomatous lobular mastitis, United States, June 5, 2019
I am 42 and just recently have been diagnosed with IGLM. I thought my doctor was joking when he delivered my diagnosis in April 2019. I'm not sure why or how I got it. I have so many questions but I r...
Fabienne, Hypoparathyroidism, France, April 20, 2019
J'ai 53 ans. En 2008, suite à une chirurgie pour cancer de la thyroïde, je me suis retrouvée en hypocalcémie sévère et crise de tétanie. Mes parathyroïdes ont été lésées et je devrai vivre sans parath...
Brandi, Multifocal motor neuropathy, United States, April 19, 2019
I am a 46 year old woman, noticed about 15 years ago my left arm was getting weak, so I went to neurologist and found that I had a bone spur splitting my c5 c6 discs, so went for the surgery had a spi...
Zainabu, Acrodermatitis enteropathica, Sierra Leone, April 18, 2019
Hi. My name is Zainabu. I am the mother of a beautiful young girl named Amani. She was diagnosed with Acrodermatitis Enteropathica at 1 years old after an almost near death experience. She had sores a...
ludovic, Fabry disease, Belgium, April 13, 2019
My name is Ludovic I’m 40 I have Fabry’s disease not having had the chance to be like the others being small. I decided to fight my illness enjoying life as if every moment was the last. I want to sen...
danielle, idiopathic ketotic hypoglycemia, Denmark, April 12, 2019
Our story Issues with multitasking, excessive activity and restlessness, poor planning and disorganization, lack of focus, issues with memory loss, issues with on-going depression and years of issues ...
Theresa, Idiopathic Intracranial hypertension, United Kingdom, April 5, 2019
I have a rare disease that suddenly changed my life. One day I was me Theresa the next I was someone I didn’t recognise, who I did like or who I wanted to be. It changed me I was no longer the person ...
Jessica, Phelan-McDermid Syndrome 22q13.3deletion, United States, April 3, 2019
Alexander was born with a rare, de novo, chromosomal deletion (22q13.3). With a healthy pregnancy it was a complete surprise when he was born with breathing difficulties and jaundice. He also had hypo...
Chloe, Avascular necrosis, United States, April 3, 2019
I am 20 years old and have had Avascular Necrosis of the right femoral hip head since I was 7 years old. I cannot remember much of when the doctor first diagnosed me but I do remember him saying I wou...
Suzanne, Cystic angiomatosis, United Kingdom, April 2, 2019
Hi Im 37 years old and my name is Suzanne. I was diagnosed with a rare condition called cystic angiomatosis 2 years ago. I see a specialist regularly and have regular scans. My symptoms seem to be ge...
