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Patients & Caregivers


Jessica, Pennsylvania

"I am blessed with a good life despite having this disease."

Jessica, Pennsylvania

When you have given your whole life to being successful to only be knocked down from the same disease that almost killed you at birth and many other times, your reality changes. 
When you go from working in your career field making money to sitting at home on disability, you lose more than just income. You lose self-worth, your dignity, pride, and friends and family. 
Well, let's start at the beginning. 
I was born with a lump the size of a cantaloupe under my left arm. I was life flighted to Pittsburgh Children’s Hospital where I stayed, whilst my mother was still in the hospital where I was born. I went through major surgery to remove the lump and test upon test to see what I had. I spent my childhood being driven back and forth to Pittsburgh for appointment after appointment. Doctor’s trying to do unnecessary surgeries just to try and get a up close look at this unknown disease. They did not have as much medical technology back then, nor did they have the wonderful world wide web we have today. As a child, my parents took care of me but did not let me sulk over my disease. I acted like a normal child around everybody else, while this disease started to make my bones vanish. I had surgery on my mass under the left arm, I had a lump removed from my neck, arm surgery to put a rod and wires to stabilize the left arm so if would quit breaking. The left humorous had broken over 2 dozen time and was bowing. Something needed to be done. Leg surgery, and countless exams, imaging, blood tests, and so on.  All the time, I went to school like normal. 
At 14 another curveball was thrown at me when I discovered I was pregnant.  I managed to work before a gave birth, doing dishes and going to school.  It kept me busy.  This was actually a blessing in disguise because after I had my daughter, I did not break my ribs and other bones anymore as something changed in my body, maybe hormones. 
I finished high school and worked, all the while dealing with this disease and a baby at home. People knew me as the teen mom but I kept my disability from most. I would tell them I had a rare bone disease and move on. I graduated high school on time. I went to college, I worked, I met my future husband all before the age of 21.
I had complications with my arm surgery which would cause another surgery. The wires in my arm got caught in my muscles and caused the arm to not work or function correctly so they were cut off at the bone. Leaving sharp edges to continue to cause more problems. I had my platelets fall to dangerous levels several times for no reason resulting in chemo treatments and high doses of steroids. 
At 27 this disease finally kicked my ass. I have lesions in my skull, spine, ribs, arms, legs, pelvis, spleen, and a mass in my chest. I have dealt with pain for so long. When I say I am in pain, it is not a little. It is unbearable. I would not wish this on anyone. 

However, I am one of the lucky ones. I am blessed with a good life despite having this disease. I have always tried to do my best and be successful. This disease is not fun but I am grateful to all of the wonderful people I have connected with through the LGDA with this disease.  Stay safe and be happy.