After ten years in the dark, I was finally correctly diagnosed with Erdheim-Chester Disease in 2015.
When I first developed uncomfortable bumps on my legs, the doctors didn’t take my symptoms seriously. Some even thought I was complaining excessively. But I knew something was wrong. After consulting expert after expert, I was eventually able to figure it out.
Erdheim-Chester Disease (ECD) is an extremely rare form of blood cancer that, if left untreated, can cause organ failure. It was so rare that I was actually the first person with ECD to ever be treated at the UK Markey Cancer Center. I’m tremendously grateful to UK Markey and the generous members in our community who choose to send support. I’m especially grateful to Dr. Saeed, who is coincidentally also my neighbor.
At the beginning of my treatment, X-rays showed the disease had crept through my skin, bones, lungs, heart, and even my brain. My doctors started me on chemotherapy drugs, and although the side effects can be difficult to deal with, they helped me get better.
When I got my diagnosis and began reading up on my condition, the first article I found predicted I’d be gone in three years. Well, it’s nearly four years, and I’m still very much alive!
For me, it’s vital to focus on truly living—as opposed to merely existing. My husband Bob is a psychiatrist, and he will testify to my positive state of mind. It’s all about how we see ourselves.
It’s also tremendously important to be surrounded by encouraging, supportive people, like my family, and especially my committed team at UK Markey.
Thank you to the friends of UK Markey for supporting this great hospital! They make a real difference for patients with very rare cancers, like me.
UK Markey Grateful Patient