Diagnosed with an incurable disease
Shortly after Emily Panzone graduated college, she noticed something wrong with her skin. She began developing patches of white skin – skin that had lost its pigment.
“It was very noticeable,” she said. “It was all over my neck, chest, hands and face.”
She visited her primary care doctor and was diagnosed with vitiligo, a disease that occurs when the pigment-producing cells within the skin die or stop producing melanin. Vitiligo is incurable, but it can be treated.
“Eight years ago when I was first diagnosed, there were so few treatment options,” Panzone said. “My doctor told me I had this disease but that there was nothing she could do about it.”
While vitiligo really only affects the color of the skin, it can have significant psychological effects as well. Because it only impacts 1% of the population, those who have the disease sometimes feel quite isolated.
“With vitiligo, you feel depressed and trapped because there’s nothing you can do about it,” Panzone said. “I was always so nervous that my children would one day think that I looked weird and not want to hold my hand.”
An opportunity arises at Tufts Medical Center
Determined to be her own health care advocate, Panzone began researching clinical trials when therapies like steroidal and non-steroidal creams failed. She came across a study being held at Tufts Medical Center, and she reached out to Dr. David Rosmarin from our Department of Dermatology.
“This is the largest study ever been done on the treatment of vitiligo,” Dr. Rosmarin said. “It could lead to the first FDA-approved medicine to treat this disease.”
Unfortunately, Panzone was unable to join the trial – she was pregnant during the first round and had just given birth during the second round. But Dr. Rosmarin thought she would improve with Xeljanz, a medication similar to the one they were using in the trial, so he and his team fought with her insurance company through multiple rounds of appeals to have the medication covered. Panzone was finally able to start taking it this past August, and she’s complimented it with light therapy.
“The improvement is exactly what I hoped for,” she said. “It doesn’t happen overnight, but I can see my pigment coming back.”
Setting out to help others with vitiligo
Before becoming a stay-at-home mom, Panzone was actually inspired by her own health care journey to become a dermatology nurse and to help others with skin conditions like hers.
“I was able to relate to all of my patients, whether they had vitiligo, psoriasis or acne,” she said. “I liked talking to patients who were newly diagnosed and giving them hope.”
Now, she has a YouTube channel where she documents her treatment with Xeljanz. One of her videos has over 4,000 views. Despite her stage fright, Panzone said she makes these videos because there isn’t currently a lot of discussion around vitiligo.
“There’s not a lot of information out there,” she said. “I’m lucky that I live in Boston and have access to research and medical care that is not available in a lot of areas, but people around the world have untreated vitiligo and I know how much that can affect someone’s life.”
Panzone plans to continue taking the Xeljanz in hopes that all of her pigment will eventually come back. But in the meantime, her children have accepted her the way she is.
“He recently asked me if my hand was painted that way,” she said. “Then he gave it a kiss.”