Jessica and sarcoma

By Jessica, United States, February 28, 2014

Hi, my name is Jessica. My story began when I was 22 years old. On February 24, 2011 I went to my doctor to have a lump removed from my thigh. It didn't look suspicious and nobody, including my doctor was concerned. A few days later, on February 29, 2011 (Ironically, it was Rare Disease Day), I got "the call" that changed my life. I was diagnosed with Dermatofibrosarcoma Protuberans. I had never heard of this. I was stunned. I found out that I was 1 in 1,000,000. It was hard to find a doctor to help me because this was so rare, but I did. I had surgery to remove the tumor a few weeks later. I am coming up on 2 years "cancer-free," but the scars, physically and emotionally, will be with my forever. I like to think that my journey really began after having surgery. A big part of having such a rare disease is feeling alone and coming to terms with an awful diagnosis. I felt like no one understood what I was going through. I struggled everyday, but somehow, I found a strength within myself, that I didn't even know existed, to continue to push forward. Eventually, I learned to appreciate life and all of the gifts that surround me. While my situation was the hardest and most difficult of my life, I managed to become the strongest version of myself that I could ever have imagined.
Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.