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...
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...
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...
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...
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...
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, 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...
Sharan, GPA, United States, February 28, 2019
I thought I had the flu, and after several days in my local hospital, I was told I had terminal lung cancer. After a second look, doctors decided it wasn't cancer, but they knew I needed to get to a d...
Katie, Misophonia, United States, February 28, 2019
My daughter suffers from Misophonia. She struggles with the way I pronounce the letter “S” in any word. Therefore, it’s been almost impossible to have a relationship with her. My heart is broken by th...
Natalie, Complex regional pain syndrome, United States, February 28, 2019
My daughter, Natalie, was diagnosed with CRPS in 2017. Since then she has had periods varying from no pain at all, to being confined to a wheelchair and walker and is now back to walking with PT.CRPS...
Angelica, Tuberous sclerosis complex, United States, February 28, 2019
I was born with Tuberous Sclerosis Complex. My mother passed it on to me and my brother without knowing. She never really had any symptoms. My brother at the age of 4, had seizures and was treated &am...
Eleanor, CREST Syndrome, United States, February 28, 2019
I was diagnosed with CREST Syndrome in October of 2017 right after my 19th birthday. CREST, also known as Limited Scleroderma, is a rare autoimmune/connective tisssue disease. It's not easy, almost no...
Sonia, Familial partial lipodystrophy, Dunnigan type, Canada, February 28, 2019
The two people in my life that lived with lipodystrophy, died before the age of 35; my mother and sister. The journey of living and coming to terms with my disease has been an arduous struggle on all ...
Sarah, Lichen Sclerosus, United States, February 28, 2019
Lichen Sclerosus is a debilitating disease that affects usually the genital area but can be anywhere on the body with the loss of anatomy, functions, cosmetics, etc. including itching, tearing, fissur...
Holly, Tuberous sclerosis complex, United States, February 28, 2019
We were living in Okinawa, Japan, where my husband was stationed. While I was getting a regular pre-natal check up they noticed an irregular heart beat. They in turn gave me steroid shots to develop t...
Kelly (on behalf of my daughter, Leila), Undiagnosed (possible connective tissue disorder), United States, February 28, 2019
Our sweet Leila was born on December 29, 2014. She was born at 39 weeks and was 8 lbs, 2 oz. There were no complications during her birth; in fact, it was an easy labor and delivery. When we got home,...
Jane, Degos disease, United States, February 28, 2019
Was diagnosed with Degos in 1996. I had a heart attack due to this disease in 2000. Took down my right artery. Looks like butterfly netting according to my cariologist. This disease causes the red blo...
Sharon, Primary Addison’s disease, United Kingdom, February 28, 2019
It all started in 1997, I was working as a stewardess for a British airline, until I could no longer fly or function normally. The most basic of everyday chores, like getting up, getting dressed, brus...
Jackie, Multiple system atrophy, United Kingdom, February 28, 2019
My mum, Pat was diagnosed with MSA in 2007 and passed away five years later in 2012.She was 76, far too young to be cared for in a nursing home, her MSA robbing her of attending her daughter's wedding...
Jule, Lupus erythematosus tumidus, Germany, February 28, 2019
Diagnosed when I was 18. Since then the disease comes and goes irregularly. Can't be in the sunlight for too long because UV triggers a new onset. If this happens the skin on my body gets red spots on...
