How scleroderma has changed my face, despite my best efforts

The disease is taking my lips and nose like a thief in the night by Sherlene Perkins | March 25, 2024

The face is what people see first on someone, and something is happening to mine because of scleroderma. I’m not a vain person or someone who primps in front of the mirror all the time. However, some small changes are starting to appear on my face.
Scleroderma will snatch your looks like a thief in the night. I kept telling my sister and others that my face was hurting, though I struggled to describe the unusual pain. My nose hurt constantly, and my lips were starting to change in appearance. Before I got sick, I had voluptuous, thick lips and a great smile that showed off my beautiful white teeth.
I tried to connect with other scleroderma patients through social media and read blogs and comments about changes in their lips and noses. As I scrolled through fellow patients’ pages, I noticed that many didn’t share photos of themselves.
I contacted one woman who said that her lips were disappearing due to scleroderma and sent me before and after photos. Two others sent pictures showing the same vanishing lips. I panicked and began making phone calls to get lip augmentation. I hoped it would return the fullness of my lips.

​Exploring my options
I had a consultation with a plastic surgeon and booked the procedure. Two days before it was scheduled to take place, the surgeon had to cancel. I was given the option to have the procedure done at the same time, but with a different doctor. Unfortunately, the other doctor had to decline because he wasn’t as familiar with my case. I was disappointed, to say the least, because I’d been looking forward to that day.
Later, while talking with my rheumatologist, I explained what had transpired with the plastic surgeon. He assured me he would connect me with one of the finest reconstructive plastic surgeons, and that I shouldn’t worry because that surgeon had helped many of my doctor’s scleroderma patients.
While I waited for my consultation, I continued to research lip augmentation. I learned about the difference between fat transfer (taking fat from another part of the body and injecting it into the lips) and lip fillers (injecting dermal fillers often containing hyaluronic acid), as well as the potential benefits and side effects of each. All the while, my facial and nose pain continued.
After my consultation with the new cosmetic surgeon, I felt ecstatic. He walked me through everything and we devised a plan. I decided to do the fat transfer procedure, with the fat being taken from my stomach, and hoped I might even go down a dress size as a result!
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No pain, no gain?
On Sept. 11, 2022, the day of the procedure, my sister accompanied me to the appointment. To our surprise, she knew the doctor. I was excited that we were all connected.
All went well, though when I woke up my lips were swollen, making me look like a duck. Quack, quack.
My daughter and sister were alarmed by my appearance and how slowly I was moving after the procedure. I wasn’t allowed to eat anything but soft foods. My stomach area was a little sore, but no pain, no gain!
I was happy thinking the thief wouldn’t get my lips or nose. I could hold on to them just a little while longer.
Sadly, a few months later, my lips left anyway, and my nose is tapering even more now, too. My skin isn’t tight, though, as is common among many with scleroderma. I haven’t been given an explanation by a medical professional about what exactly is happening to me, but I’ll continue to seek answers. Meanwhile, many in our community look like twins with our thinning lips and tapering noses.
All things considered, I want to encourage other patients to advocate for themselves. Learn everything you can about any procedure you’re planning to have, whether it’s elective or medically necessary. Too many patients think that they work for the physician, and not the other way around. You can express your need for clarification, and you can say no. If at first you don’t succeed, try again.