Natalie’s Running For Rare NYC Marathon

 

The National Organization for Rare Disorders (NORD) is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them. Rare diseases impact the lives of 25 to 30 million Americans – two-thirds of whom are children. On average, it can take a patient 5 to 7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease.

 

I am part of the 1 in 10 Americans who have been diagnosed with a rare disease. In January of 2018, I was told that I have a localized form of scleroderma. Scleroderma is an autoimmune disease that hardens skin and connective tissue. It comes in two forms, systemic and localized, and I am fortunate enough to have the less severe of the two. While it is the milder form, the fact that it is on my forehead left me with permanent disfiguration and put me at risk for optical, as well as neurological, damage. There wasn't a single doctor in my hometown who had treated this disease before, so I flew to Italy and continued my semester abroad as planned. While abroad in Florence, I started treatment to stop the progression of the scleroderma with a world-renowned rheumatologist who specialized in the auto-immune disease. I then spent the next couples of years between doctor’s offices in Wisconsin and New York; all while feeling like my disease wasn’t truly understood.

 

There have been a lot of highs and lows throughout this journey, but I'm happy to say that my disease is now dormant and that I was able to wean off of the immunosupressant drugs in July of 2021. It took a while, but I finally started to feel enough like myself to work out again. When you have an autoimmune disease, one of the hardest things to accept is that everything that is happening is out of your control. You feel like your body is failing you. Running has allowed me to take back control. It is for that reason that I am running the TCS New York City Marathon and fundraising with NORD.

 

I understand that, while I was able to find relief for my symptoms, others may go their entire lives without ever receiving a diagnosis. The funds raised from the Running for Rare team will support NORD’s Undiagnosed Diseases Network, which helps individuals receive a diagnosis from the National Institute of Health (NIH). Donations in support of this campaign will be tax-deductible to the extent permitted by law.

 

Thank you for your continued support. I couldn't have gotten through the last three years without it.

 

Natalie