Eric and I (Amanda) were married on 9•10•11.Only 4 short months later our lives changed forever. Since then, Eric has decided he is dedicated to spreading the word about Adult HLH and other Histio disorders. We hope our story will reach people all over the world who will share this with just one other person and make a difference as we embark on this journey together.
My name is Eric. I married my girlfriend Amanda of 10 years on 9•10•11. Just 4 months later at the end of January 2012, I became very I’ll in a matter of days. 10 days after being admitted to the ER she transferred me to Temple hospital in Philadelphia where I fought for my life sedated, medically paralyzed, and on ventilator support for two months.
Upon waking up, I had learned I was diagnosed with not 1, but two rare diseases – Still’s Disease, a rare form of severe arthritis and HLH – Hemophagocytic Lymphohistiocytosis, a rare blood disease which affects the immune system and is treated with high dose steroids and chemotherapy and other medications. Often times, patients will need a bone marrow transplant.
I had never been sick in my life and I couldn't understand what was going on from all the medications. I came to know a machine called ECMO, similar to dialysis for your lungs, saved my life while doctors vigorously fought for answers. Currently, I am the longest surviving person of ECMO support who did not receive a lung transplant with a total of 34 days at Temple University Hospital in Philadelphia, Pennsylvania. I could not talk or lift a muscle in my body when I awoke and lost over 100 lbs and all of my strength. I had to learn how to breath, speak, eat and walk again.
After 99 days, I finally came home on May 11th 2012. It is still sometimes confusing and unbelievable that this could happen to me.
Please help me share my story to help others and find a cure.
The content on this site is for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult your physician to obtain personal healthcare and treatment options.