My name is Eric. I am 28 years old. Last year I married my girlfriend, Amanda, of 10 years on September 10, 2011.
Just four months later, at the end of January 2012, I became very ill in a matter of days. 10 days after being admitted to the ER, Amanda transferred me to Temple University Hospital in Philadelphia where I fought for my life, while being sedated, medically paralyzed and on ventilator support for two months. Upon waking up, I had learned I was diagnosed with not one, but TWO rare diseases: Still’s disease, a rare form of severe arthritis, and Hemophagocytic Lymphohistiocytosis (HLH), a rare blood disease that affects the immune system and is treated with high dose steroids, chemotherapy and other medications. Often times, patients will need a bone marrow transplant.
I had never been sick in my life, and I could not understand what was going on because of all the medications. I came to know a machine called ECMO (extracorporeal membrane oxygenation), similar to dialysis for your lungs, which 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 breathe, speak, eat and walk again.
After 99 days, I finally came home on May 11, 2012. It is still sometimes confusing and unbelievable that this could happen to me. I spent months in pain every day trying to gain strength and get my Still’s disease under control. Now I take an injection every two weeks plus several other medications and lead almost a “normal” life like I used to. I hope to share my story with others to raise awareness for both of these rare diseases, let others know that they are not alone and try to help those with these diseases get the help they need.