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...
Stephanie, Aicardi syndrome, United States, February 28, 2019
When Kaela was in utero, we found out Kaela had an abnormality of the brain. Kaela has Agenisis of the Corpus Collosum, the part of the brain that connects both sides did not develop. It wasn’t until ...
Niki, subglottic stenosis, United States, February 28, 2019
After several surgeries for endometriosis and 6 rounds of IVF, I was pregnant with my second miracle baby and was struggling to breathe. A friend urged me to see an ENT, so I did. He said my airway wa...
JC, Intralobar congenital pulmonary sequestration, United States, February 28, 2019
It was winter of my freshman year of college when I began getting very sick. I would progressively go into states of barely being able to breath and shivering. I was diagnosed with pneumonia that sent...
Joanie, subglottic stenosis, Canada, February 28, 2019
I was an active mom, wife and person who worked full-time, was studying at a Graduate level and just trying to live life to the fullest in my late 30's. I was still trying to play sports when I was a...
Megan, Ehlers-Danlos syndrome, United States, February 28, 2019
First published by: Love What MattersHow in the world does one go from being an athlete to becoming a “professional patient” and enduring 35 surgeries all because of ONE fall? It sounds made-up. I can...
Toni, Gitelman Syndrome, United States, February 28, 2019
After years of searching for answers and being blown off by doctors, my husband Billy was finally given a diagnosis of Gitelman Syndrome in June 2011.His very first clue that something may be wrong ca...
Ann, subglottic stenosis, United States, February 28, 2019
At age 40 I began to train to run a half marathon. Before I reached my goal I was coughing all the time, misdiagnosed with sinus issues that resulted in a surgery that didn't fix anything, misdiagnos...
