BLog

Warrior Wisdom

EDS

EDS

Growing up, my stomach was my biggest problem. I got pneumonia when I was 10 years old, which led my stomach to reject anything I tried to eat after multiple rounds of antibiotics and steroids. After that, I was in and out of hospitals and dependent on an NG tube for...

Fighting 2 Rare Diseases

Fighting 2 Rare Diseases

I was diagnosed at age 8 with the rare, genetic disease Familial Adenomatous Polyposis (FAP), which I inherited from my mother. FAP is caused by a mutation to the APC gene and causes 100s to 1000s of precancerous polyps to develop in the cancer. These polyps will turn...

From Patient to Scientist

From Patient to Scientist

When I was little I always seemed to have problems with my joints, I would be in and out of PT all throughout my high school years. We knew I was hyper mobile because my shoulder would always dislocate. My doctors really didn’t think anything of it, and my life was...

Living Chronically

Living Chronically

In 2016, I was in community college about to transfer to a four year university. I remember it was February, and I had not felt well for a while. I got what I assumed was a bad case of strep throat. I went to the doctor, got told it was a sinus infection, and I went...

My schizoaffective disorder gave me clarity

My schizoaffective disorder gave me clarity

From the age of 4, when my parents divorced, I had symptoms of poor mental health. I was sent to see school counselors and behavioral health clinics in my younger years. When I was 12, I had my first hallucination that I kept to myself; diagnoses of depression and...

CRPS Warrior

CRPS Warrior

For many years, I had off and on sciatic pain in my left leg. Tried various therapies to relieve the pain, but to no avail. After finding a competent massage therapist, he discovered a lump in the back of my leg at the base of my left butt cheek. After having it...

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...

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