I was born with X-Linked Hypophosphatemia (XLH), it is a rare genetic disorder that affects about one in 25,000 people. I am one of them. I have a low level of phosphorus in the blood (Hypophosphatemia). This causes a wide range of symptoms and disorders that affect...
My earliest memories are of pain. That sounds rather dramatic to say, but it's true. I was the kid who was always limping through Elementary School, who constantly complained of this or that ache. But as a child, I was assured that it was all growing pains. I...
Before I was even born my quality-of-life seemed low. My parents were told they could abort me because the type of spina bifida I have Is known to be devastating. My parents were told that I wouldn’t be able to walk, they would have to catheterize me long-term and I...
I was bullied from a very young age. On top of that, everything I tried out for, I was told I wasn’t good enough. I had one happy place-theatre! My symptoms began in August 2017-I had nightmares that theatre would exclude me as well. Then September 1, 2017, those...
I have had issues since I was a child. I was sick often. As I got older and went to the doctor by myself, I was called a liar. Nurses refused to believe I had a sinus infection once a month; that I had a respiratory infection every few months. Then one year I had an...
Hi my name is Amanda Phillips and it took 10 years to get diagnosed. I had started experiencing symptoms when I was about 6 it started off with really bad pain in my legs, my hips and my lower back, but my parents just passed it off as growing pains then I started...
My symptoms started really showing up in the last two years of high school. But my doctor at the time just though it was all in my head. So it wasn’t until after I had finished high school and moved out that I really was able to start looking for real answers. I went...
As a child I knew I was different. I used to do the normal "party tricks" in gym class and such and be able to creep out my friends. Around the age of 13 my problems started getting bad. Constant joint pain and instability. I brushed it off thinking it was due to me...
It all started in September of 2018 when my health went from bad to worse in just a matter of days. I went from being an extremely actively involved high school student to experiencing a whole host of symptoms after a bout of mononucleosis. I spent my summer going...
Hi! My name is Izzy Kornblau, I’m 23, and I have Ehlers-Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), and a few other common comorbidities. I experience chronic pain, subluxations/dislocations, dizziness, and abdominal pain, among many other...
I've always been a delicate flower, as my family has said. Crying from pain while jumping on the trampoline, breaking dishes while helping mom in the kitchen, and not being able to sit still in church. "She needs a doctor," people would whisper all day. Then, winter...