Carly Harper

I was diagnosed with Raynaud’s disease when I was about 17 years old. It mainly affects my extremities in terms of cold temperature, because I will lose blood circulation in those instances. It could be a hot summer day, and I’m sitting in a room with air-conditioning but lose sensation in my feet, because they’re so cold. My hands have turned white, purple, and blue, until I warm them up and see the blood return to my fingertips. It’s very painful whenever that happens, and it’s possible for me to have symptoms everyday, which can get frustrating. In recent years, I was told by my rheumatologist that there’s an underlying autoimmune issue associated with Raynaud’s that’s brewing in my body as new flare ups have appeared such as very painful joint swelling, fatigue, and even when I had shingles at 25 years old. We’ve done testing for lupus, rheumatoid arthritis and other autoimmune diseases, but we’re still unsure of a clear diagnosis at this point. As a professional dancer and dance studio owner, my body is my instrument, and there are times that I’m in pain when I’m teaching dance classes. I’m blessed to be in tune with my body and know when I need to take a break, but I’m proud to power through.

I honestly didn’t think too much of it when I was first diagnosed. It has definitely gotten worse over the years, and that makes me nervous to have to potentially be put on a steroid to help with symptoms and flare ups. I don’t want to have to depend on a drug when I’m not even 30 years old yet. However, I’m blessed to be able to have that as an option if it is something that I will need to do at some point.

“Keep going!” Is what kept me going. If you face any sort of adversity, just don’t give up on your overall goals. Use your support team, cry if you need to, take a break, and then keep on going!

My mom is who I lean on for support. She’s a saint! She’s actually an RN at a hospital, so I’m so fortunate to have her as my personal supporter. She’s reassuring and encourages me whenever I’m having a flare up. She always brings me back to reality if I get overwhelmed and reminds that I always have my doctors in my corner for help as well.

My awareness and being prepared as much as I can. Year-round I’ll wear insulated boots to keep my feet warm, I’ll keep a pair of gloves in my car, and in instances when I have to perform on set or on stage somewhere, I’ll bring sweatshirts (or my onesie) to keep myself warm enough to dance. Researching options about treatment for my autoimmune disease has also helped change my mindset and awareness.

If I could give advice to someone that may be going through this same thing is “I know it’s frustrating, and sometimes there are no answers or difficult diagnoses for autoimmune diseases associated with Raynaud’s. Even through the frustration, keep pushing, keep going, and do your best. Do your research and don’t be afraid to ask questions with your doctor. It’s not bad to get a second opinion, and be sure to log any flare ups you have. It’s important to be active and keep your blood circulating. Eating well is also important. Just remember, you’re a person—you’re going to have ups and downs. Not everyday is 100%, but just keep the positive vibes and keep going!”

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