The story of Dee Dee
It’s Rare Disease Month and I was asked to share my story as a way of raising awareness and thereby encouraging more research on rare diseases. I was recently diagnosed with Dupuytren’s disease, often referred to as “the most common disease no one has ever heard of.” I first noticed a painful pea-sized lump on the palm of my left hand. I Googled it and read about Dupuytren’s. I was certain that no one in my family had ever had this disease and dismissed this self-diagnosis knowing that it was hereditary. Two days later, after mentioning it to my sister, she texted me with the news that my oldest sister has DD in both hands with finger contracture. After researching a bit more, I read about LD, Ledderhose disease, which is the same disease as it manifests in the foot. Yes, upon further examination, I discovered LD in my left foot. I found several Facebook support groups from which I gathered much valuable information. Long story short, I’ve just completed my first round of radiation therapy in the hopes of halting the progression of the disease and am praying it does not manifest itself in my right hand and foot. As a fine artist, this diagnosis was devastating at first. Although, painful and incurable, it progresses differently for each person. In spite of the 10 million sufferers, limited research has DD sufferers traveling long distances for treatment with experienced specialists. Many primary care physicians and even hand surgeons are not familiar with the early treatment options available and advocate for allowing the disease to progress to the point where surgery is needed. Please consider becoming familiar with this disease because, chances are, someone you know has it but may be dismissing it as temporary ganglion cysts, plantar fasciitis or some other more commonly known ailment. Radiation therapy can be highly effective in only the early stages of the disease so, for many who wait too long, painful surgeries, Xiaflex injections, and other treatments may be the only option for this potentially crippling disease. Unfortunately, this disease can also present itself in males in the penis which is referred to as Peyronie’s disease. DD is not a cancer and is not considered life-threatening although it can be life-altering. As with many of life’s trials, DD and other health issues can serve as stepping stones to a life more fully lived if viewed from a positive mindset. I invite you to learn more about DD at www.DupuytrensDiseaseSupport.com