Scleroderma is an autoimmune disease where your body produces too much collagen. There are 300,000 people in the United States with scleroderma. It affects children and men, but the majority of individuals are women. There are different forms of the disease and every patient is affected differently. You can have Diffuse Scleroderma, which means your skin will start to feel extremely tight, almost as if you’re turning into a statue. Or you can have Systemic Sclerosis, which means your heart, lungs, stomach, or kidneys become severely compromised. Lung failure is the leading cause of death. The medications that they give to treat it are used to treat other diseases. There is no specific medication designed to halt the progression of scleroderma.

 

The first instinct I had when I was diagnosed was to research it on the Internet. By the time I was done, I was struck with a deep terror that shook my bones like never before. It was like I swallowed a seed of every bad feeling on Earth and it blossomed those feelings into the fiber of my soul. What I gathered from my research was that I have an awful disease that has no cure, the lifespan is about five years, and I’m going to suffer tremendously until I die. I called my cousin hysterically crying, and she told me not to worry, that none of those things would ever happen to me. She said I was going to be ok. And for a few years, I believed that.

 

The disease has taken over my entire body, tightening my skin so much, you can’t pinch an inch. My hands have taken the worst beating, with my fingers permanently curled into balled fists that I cannot open. My caramel skin color is now jaded with white splotches everywhere and people often think I’ve been burned. Along with all this comes joint pain, skin ulcers and digestive issues. It’s a difficult feat to be stricken with illness at an age where you’re where supposed to be finding yourself. Twenties are the age to build yourself into who you want to be, and having scleroderma has molded me into someone wise beyond my years.

 

Scleroderma has presented me with an array of problems that were out of my control. As I watched my body change, I needed an outlet for what was going on. So I created a Facebook page called Scleroderma Strong, because I wanted to shine light on such a rare disease. Today, with over 10,000 followers, I want to show the world that it’s ok to be different and to not be ashamed of what we’re going through. There is a lesson to be learned from every situation we go through in life, you just have to humble yourself to be open to accepting it.

 

 Awareness is the key to raising money towards research to find a cure, which is why I attend the “Stepping Out to Cure Scleroderma Walk”, every year. It’s an indescribable sensation to be surrounded by loving friends and family, as we raise funds and walk for a cure. Sometimes I can walk the whole thing, and other times I need golf cart assistance to the end. But what matters is that I’m there, along with all the others that share the same strife. We won’t give up until a cure is found.