Sarcoidosis is a rare inflammatory disease where cells in the body form clumps resulting in pain and damage. I was diagnosed at age 12.
Scarlette F. Washlock
Skin Deep Strength, Foundation for Sarcoidosis Research
At an age when most kids are beginning to grow confident in their skin, I was diagnosed with sarcoidosis. Instead of building self-esteem, I found myself battling a rare disease that changed the way I saw myself. Sarcoidosis can affect any organ in the body. In my case, it impacts my lungs, eyes, and lymph nodes but it also manifests visibly in my skin. On top of that, the medications I’ve taken to manage the disease have caused further skin damage. Healthy skin is vital to people at any age. It plays a crucial role in both emotional and physical well-being.
Age 12: “I woke up from a sleepover and noticed painful red and purple welts on my lower legs.”
My mom was worried and took me to my pediatrician. After an examination the doctor diagnosed me with erythema nodosum which is a skin condition typically found on the legs marked by painful nodules and bruising that often signal an underlying illness. Not only were the bumps physically painful, but learning they were a symptom of something more serious made me cry. It hurt to walk, and I was told they could last for months. It was hard to focus at school and I had to take a break from Irish dancing because it was too uncomfortable. Not knowing why something is happening to your body is scary and it made me feel helpless, like I had done something wrong to deserve it.
Age 13: “I cried in my moms arms because of stretch marks on my body.”
I was diagnosed with sarcoidosis 6 months ago. My doctors put me on 40mg of the anti-inflammatory steroid Prednisone. I gained 20lbs in the span of 2 weeks. The weight gain caused stretch marks on my inner thighs, belly, calves, chest, and hips. I felt so insecure and cried when dressing in the morning and seeing scars on my skin. They were extremely painful and itchy. In the summer I wore pants because I felt ashamed.
Age 14: “I bought makeup for the first time so I could cover the rash on my face.” Being on a high dosage of steroids for a long period can have side effects such as this. The tiny bumps residing on my forehead made me feel ugly.
Not only has my skin been affected by the side effects of the sarcoidosis treatment but the condition itself directly impacts my skin in the form of a rash. For six months, I experienced a pimple-like rash on my arms, legs, chest, and back. These are tiny pockets of inflammation beneath the skin that come and go. This rash has taken a toll on my emotional health. I’ve been asked, “What is that?” and “Is it contagious?” Questions like that have made me feel self-conscious and insecure in my own skin.
Age 17: “I feel like an animal in a zoo being stared at when I walk through the gym in shorts.”
Not only has my skin been affected by the side effects of the sarcoidosis treatment but the condition itself directly impacts my skin in the form of a rash. For six months, I experienced a pimple-like rash on my arms, legs, chest, and back. These are tiny pockets of inflammation beneath the skin that come and go. This rash has taken a toll on my emotional health. I’ve been asked, “What is that?” and “Is it contagious?” Questions like that have made me feel self-conscious and insecure in my own skin.
Age 18: “I’m beginning to believe I can guide others through their own journey of having a rare disease.”
I never wanted this disease to define who I am, but throughout my teenage years, I went through what felt like a horror story of skin issues. At times, I felt ugly, ashamed, and isolated. Living with sarcoidosis has brought intense emotional challenges; both highs and lows. But in a strange way, I’m grateful for it. This disease gave me “thick skin.” I still deal with the symptoms every day, but I’ve learned to say: I’ve got this. In the fall, I hope to be studying medicine at the University of Arizona. My goal is to become a doctor who treats people with rare diseases and makes them feel heard and loved. I’ve recently begun contributing to the Foundation for Sarcoidosis Research to find meaningful ways to make a difference. When I look back six years ago, I see a scared little girl with strange blotches on her legs. Today, that girl has grown into a woman who is empowered in her own skin because of sarcoidosis.
