The story of Brenda
MY STORY: In light of Rare Disease Month, I wanted to share my story with many of you that do not know it. I was diagnosed in 2012 with Ledderhose Disease. This disease is a close kin to Dupuytren’s Disease/Dupuytren’s Contracture. My disease causes nodules similar to stones/rocks under the skin of your feet. It is typically found in the arch area of your foot where the skin is thin, but can be above and below the arch. In the hands, it can cause a pucker, sometimes a cord and in many cases causes the fingers to contract. It is unfortunately passed on generation to generation and I have this on both sides of my family.
It is a incurable disease that can bring on severe pain and some to become disabled. With over 10 million sufferers it is hard to believe we have very little treatment available to us. Many of us travel for hours, if not days to find someone that is familiar with our disease. Our treatment is extremely limited since invasive types of surgery can cause our disease to become active and spread like wildfire. I found out about noninvasive radiation therapy and had this treatment in 2015. I am now pain free, no new nodules and those that I had are flat.
If you would, take a minute to get familiar with our disease. More than likely someone you know over he age of 50 has this disease. Feel free to share this information and our website. If you do know of someone with this disease we have a terrific Facebook forum for people to gather more information and possible treatment options called DART-Dupuytren’s Advocates for Radiation Therapy. Our website is www.Dupuytrens.Club.