Scleroderma Strong: How I Learned to Love the Tough Skin I’m In

It’s amazing to watch changes happen to your body as the years go by. The outcome of those changes can be immensely rewarding – especially when you’re forced to witness it yourself.

Sometimes in life, we are catapulted into situations that break us down, literally. And in the process of picking up the pieces to put ourselves back together, we unexpectedly discover a streaming river of strength that runs within us.

At the young age of 22, I was thrown into the raging bullpen of an incurable disease called scleroderma. And now, at 30, I can tell you the past eight years have not been easy. There are times – and this is clearly one of them – when life breaks us open to the raw bitter core of our soul, to help us realize the real purpose of living.

Scleroderma is an autoimmune disease that causes your body produces too much collagen. There are 300,000 people in the U.S. currently living with scleroderma. While it does affect children and men, the majority of the individuals stricken are women.

There are various 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 they provide to treat the disease and its symptoms were originally designed to treat other diseases – which means there is no specific medications designed to halt the progression of scleroderma.

After I was first diagnosed, my first instinct was to all the research I could on the Internet. By the time I was done, I pushed back from the computer aghast. I was struck with a deep terror that shook me to the core like never before. It was as though I just swallowed a seed of every bad feeling on Earth and it blossomed feelings of dread across the fiber of my soul.

What I gathered from my research is that I have an awful disease with no cure. And worse yet, my lifespan was to be just five years, during which time I would 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 truly believed that.

Today, 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 causing people to believe think I’ve been tragically burned. Along with all this comes joint pain, skin ulcers, and digestive issues.

It’s a difficult feat to be stricken with illness at such a young age – at a time in your life when you’re supposed to be finding yourself. The 20s are typically a period when people start building themselves into who they want to be.

Because Scleroderma has presented me with an array of problems that are totally out of my control, I can honestly say this disease has molded me into someone wise beyond my years.

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 for 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 walk, while other times I need golf cart to help me get to the end.

The annual “Stepping Out” walk doesn’t take place again until Feb. 16, 2019, but I’ve already got it on my calendar – and you should too. It’s never too early to make plans for such an important cause.

Throughout this process, called life, I have learned what matters most is that I’m here, along with all the others who share the same strife. And we won’t give up until a cure is found.

So please keep the Scleroderma Foundation in your heart – and on your radar too! Our next fundraiser event is an evening of art, wine, and music called “Art at the Park at Sunset” on Sept. 15, at Park West Gallery.

To learn how you can help, contact Ferne Robin at 954-798-1854 or via e-mail at: sclerodermafl@gmail.com. For general information, visit www.scleroderma.org

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