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My Journey

My Diseases Explained

I HAD A DOUBLE LUNG TRANSPLANT… It is 4:20 am and I am unable to sleep. Mornings like these, when I have spent the night tossing,...

Wow, it's been a year... shockingly, it went fairly fast. (Looking back now--funny how that works) I had my share of speed bumps, which...

Rare Disease Day takes place on the last day of February every year. It was first launched by EURORDIS and its Council of National...

This morning started hectically. I was to have a right heart cath done around 1:30 pm but they came in early this morning, woke me up,...

Made it six days this time! Unfortunately, Cleveland Clinic has become home away from home. Last Friday (February 3, 2017) I weighed...

My primary disease is P.V.O.D or, Pulmonary Veno Occlusive Disease. Only 1-2 people PER 10 million people have it in the world. So...

12:34 pm, January 27, 2017... a moment forever burned in my memory. Leading up to this moment I had been admitted to the hospital, AGAIN....

My name is Madison. I am currently 23 and up to about 21years of age, lived a pretty normal life. Great childhood and typical teenage...