When the words ‘You have scleroderma’ come as a relief

It was pretty terrifying to be 21 and to realize that you’re going to be sick for the rest of your life.

In October of 2012, I discovered a bald spot on the back of my head. I’d already had a rash on my leg for some time. A week after I found the bald spot, I became very ill and was running a high fever.

The doctor diagnosed me with a severe fungal infection and put me on intense medication. I had to get my liver checked every two weeks, because the medicine put me at risk for liver failure. After two months on this medication, I was still sick, the rash on my leg persisted, and my hair was continuing to fall out. So we stopped the treatments and I then endured weeks of tests and blood tests to try and figure out what was making all of this happen.

At that point, there were days when I could not get out of bed on my own, and I had severe pain in almost every part of my body.

After months of trying to figure it out, and a lot of online research, I was finally sent to a rheumatologist. It was then that I was diagnosed with systemic scleroderma and pre-lupus, along with other scleroderma-related conditions, mostly gastrointestinal.

Honestly, after spending so long trying to figure out just what it was that was making me so sick, when I first heard, “You have scleroderma,” it was almost a relief. It had a name. I knew what it was, finally. I didn’t feel like I was just crazy.

I’d been having symptoms of scleroderma for years, and they had always been diagnosed as other illnesses.

Getting on with things

Scleroderma is an autoimmune disease, which means that the body’s immune system attacks itself. Scleroderma involves the hardening and tightening of the skin and connective tissues. It has two forms; localized, which affects the skin, and systemic — which I have — which affects my skin as well as my internal organs and internal systems.

There is no cure for scleroderma. There are only treatments to help manage particular symptoms.

Now that I am on various medications to maintain my symptoms, I am feeling much better and can continue my normal daily activities. I have to get a lot of sleep, and have started to figure out my limits, what I can and cannot do. I try to exercise and maintain a healthy lifestyle. It’s often difficult. I’m still in my twenties, and many of my friends do not have limitations like mine. I have to stay on top of my doctor appointments, so that I can make sure that the disease has not started to affect other organs.

And when it starts to, I will have to deal with those symptoms as well.

There are 300,000 Americans with scleroderma, and my story is not unlike that of many others who have the disease. The exact causes are still unknown, but scientists and medical researchers are working hard to make those determinations. The Scleroderma Foundation is a leading nonprofit supporter of scleroderma research, funding an average of $1 million in new grants each year to find the cause and cure for scleroderma. Although funding from National Institutes of Health (NIH) has increased recently, scleroderma funding is still a relatively low priority.

For now, I try to take advantage of every day. I want to be with the people who are really great and now so much the people who are not positive influences in my life.