How My Niece Reacted to Hearing About My Digital Ulcers From Scleroderma

My niece and I were hanging out the other day and we went shopping for rings for an event she and I were attending over that weekend. As we mulled over gold, silver, gemstones and rose gold rings, she casually asked me why my fingers were so much shorter than hers, and why most of my fingers were missing the fingernail all together.

Inwardly I cringed. My hands and fingers have always been a sensitive subject for me to discuss, mostly because I’m embarrassed by them and I feel very insecure and inadequate whenever someone looks at them or they are mentioned. But this was my 12-year-old niece asking me, with nothing but concern and empathy in her eyes. I never want her or anyone I love for that matter to feel like they can not come to me and ask me questions about my body, my scars, my surgeries or my doctor appointments.

To me, the more I open myself up and share my experiences, the more familiar the disease scleroderma becomes. I mean, let’s face it: a small percentage of people know exactly what scleroderma is and that needs to change drastically.

So I took a deep breath and started to tell my beautiful niece all about why her aunt’s hands were nail-less and crooked. When I was first diagnosed with scleroderma, my hands looked perfectly normal. Long, slim fingers with short, round nails which I even sometimes polished. As my disease progressed, I started to get really painful and quite large sores under my nail beds and on the tips of my fingers. I quickly found out that the sores were called digital ulcers and were fairly common in people who were diagnosed with scleroderma.

Scleroderma causes your skin to become very tight and hard. This can lead to pressure wounds on your extremities, also known as digital ulcers. Scleroderma can also make it very hard for the person living with the disease to heal, because the skin becomes so tight it prevents proper blood flow throughout the body. In order for the body to heal itself, the blood needs to clot. Scleroderma make clotting next to impossible as well as making the wound extremely painful. It can cause serious infections and slow down the healing process, causing a simple cut – which normally takes a few days to a week at the most to heal – to take months or even a year or more to completely heal.

For some reason I tended to get digital ulcers quite frequently and they indeed were extremely painful and took forever to heal. Some of them became infected and the tips of my fingers would turn black and gangrenous from the skin dying. It was awful. The wounds kept coming, one after another after another. I tried everything to help prevent them from developing but nothing seemed to work. Medication after medication, dozens of different creams, I even changed my diet and gave up all caffeine. Nothing seemed to do the trick.

In 2005, five years after I was diagnosed with scleroderma, I developed a severe ulcer on my ring finger. It became gangrenous almost immediately. Due to the severity of the wound I had to go see a plastic surgeon to see if debridement of the wound was an option, which means that the doctor would numb the finger and remove all of the necrotic, dead skin to help the wound start to heal. The first plastic surgeon I went to told me I needed to amputate my finger to below the knuckle! Hearing that made me feel completely heartbroken. I did not want to lose a finger. As it was, due to the numerous digital ulcers I continued to get, most of my fingers were half the size of the average person’s fingers and were missing their fingernails.

Removing my finger was not an option in my eyes, so I saw another doctor – this time, a hand surgeon. He recommended a brand new procedure that he himself had only preformed on three other patients living with scleroderma. The procedure was a surgical procedure that would re-route some of the veins inside my hand to help increase blood flow to all of the fingers and in turn would help with wound healing, among other things. This sounded 100 percent better than cutting off one of my fingers, but surgery is a very big deal and this type of operation had only been preformed three times. To say I was nervous was an understatement.

On the day of the surgery I was so nervous! What if they messed something up and I lost not just my finger but my whole hand? What if I didn’t wake up? What if the surgery didn’t work and I ended up having to amputate my finger anyway? I relayed all of my concerns to my doctor as they started to numb up my arm for surgery. He looked me right in the eyes and said, “I am hand surgeon. I will do everything I possibly can to save your finger. I am not in the business of removing fingers, I’m in the business of saving fingers!” With that I was sedated, and the next thing I remember was waking up in the recovery room vomiting from the anesthesia.

The surgery turned out to be a great success. They removed all of the gangrenous skin from my finger after the operation and because of the hand surgery I was able to save my finger and the nail. This surgery was so successful for me I ended up having my other hand done about seven years later. However, the surgery did not completely cure me from getting digital ulcers. I do still get them but the sores are not nearly as severe as they used to be and I do not get them quite so frequently. To me that is a success.

After I finished telling my niece this story she looked at me with tears and love in her big, brown eyes. A part of me debated if I told her too much at too young of an age, but then she surprised me by giving me a big, warm hug and whispering in my ear, “Aunt Amy, your hands are beautiful to me and I am proud of you for being so brave!” Those words coming from a 12-year-old girl meant more to me than I could ever express into words.

So anytime I am feeling down or insecure about my body or depressed about how my life has changed since being diagnosed with this awful disease, I just think back to my niece and her kind words of love, and I realize no matter what happens in my life, I will never give up. I will fight and I will win. I have the strength and if I need a little more I have the most amazing family and friends to help me shoulder the load. Living with scleroderma is painful, depressing, difficult and exhausting, but as long as I have my amazing family and friends around to rally with me, I can get through anything.

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Thinkstock photo via LiudmylaSupynska.