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Warrior Wisdom

XLH weakens my bones, but not my will!

XLH weakens my bones, but not my will!

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...

Growing Pains

Growing Pains

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...

Beating the odds

Beating the odds

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...

From Bullied to Beauty

From Bullied to Beauty

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...

Long Road to Rare

Long Road to Rare

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...

Chronically Jessica

Chronically Jessica

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...

My story

My story

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...

My Unexpected Journey to Learning Self-Advocacy

My Unexpected Journey to Learning Self-Advocacy

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...

Courageous Carmi

Courageous Carmi

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...

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