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Nonprofit helping cancer patients keep hair

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WINSTON-SALEM — A statewide nonprofit is helping cancer patients pay for a new kind of treatment that has been shown to help prevent hair loss during chemotherapy.

Heather Brown founded Hope for Hair Foundation after being treated for breast cancer in 2016. Brown, who lives in Davidson, said she was one of the first in the state to use scalp-cooling technology during her chemotherapy, and as a result, she lost less than 10 percent of her hair.

Because her sons, ages 14 and 18 at the time, had seen Brown’s mother-in-law go through chemotherapy and lose her hair, she knew from the beginning of her treatment that she wanted to reduce her own hair loss.

“It was very important for me to try and be as normal in the process as I could and keeping my hair allowed me to do that,” Brown said. “I knew life was not going to be normal for a while. And me looking like me was probably the best way to do that, to keep things normal.”

She began researching what she could do to limit her hair loss and discovered scalp-cooling technology. There are multiple devices that have been tested to work, but Brown was attracted to DigniCap, a machine produced by Dignitana and available at the cancer center at Wake Forest Baptist Medical Center in Winston-Salem.

Dr. Susan Melin, a hematologist-oncologist for 27 years at the hospital, treated Brown’s breast cancer and administered the DigniCap.

According to Melin, the device is a tightly-worn silicone cap that patients wear on their heads while at each chemotherapy session. A fluid cooled to around 40 degrees is circulated through the cap, cooling the scalp. That causes the blood vessels around the hair to constrict and slows the metabolism of the hair follicles, limiting the damage done by the chemotherapy drugs to the hair.

Melin was involved in several trial studies of DigniCap that aimed to show the Food and Drug Administration that the device worked.

Nearly 70 percent of participants find that they keep at least half their hair and don’t feel as if they need to cover their heads with hats, scarves or wigs, the study found. There is also evidence that those who do lose their hair find it grows back faster with scalp cooling.

“I’ve had patients who’ve lost less than 10 percent of their hair, and it’s usually around the ears and the nape of the neck,” Melin said. “So as long as their hair isn’t really short, nobody noticed.”

Brown kept about 90 percent of her hair, which she said boosted her mental health and helped her keep her dignity. People never knew she was going through cancer just by looking at her, she explained.

Other patients have similar reasons for keeping their hair, Melin said. Hair loss is often the first thing her patients ask about, she said.

“Not ‘Am I going to die from cancer?’ ‘Will I be deathly sick from my chemo?’ But ‘Am I going to lose my hair?’” Melin said. “I think that anything that we can do to alleviate side effects for patients undergoing chemotherapy is a good thing and a definite progression and improvement in treatment.”

There are some drawbacks to the treatment, however. Brown said while wearing the cold cap, she was “chilled to the bone” and shaking. But she was determined to get through the treatment.

Melin said most patients are able to easily withstand the cold and only a small number experience headaches related to it.

Another issue is cost. Few insurance companies are covering the treatment, Melin said, and DigniCap can costs hundreds of dollars for each session.

Brown paid a total of $3,000 out of pocket for six treatments. She said she was lucky to have been able to afford that, but knows many others can’t.

That’s why Brown founded Hope for Hair. The nonprofit raises money and offers $1,500 subsidies to patients who otherwise wouldn’t be able to afford scalp cooling. It partners with another organization, HairToStay, to vet applicants.

To qualify, patients must make less than four times the poverty level, Brown explained. You can apply at hopeforhair.org. Donations can also be made to the foundation on the website.

The foundation also provides hair-care gift baskets to DigniCap patients around the state with items such as specialty brushes and shampoos that aid in the scalp-cooling process.

Brown said it is a humbling experience to be able to help other people.

“I don’t ever wish it upon anybody but I’m so grateful that we are able to help,” Brown said. “There aren’t many people who are as fortunate as I am that are going to be able to pay for that on top of everything else that comes along with going through your treatment.”

Women who Hope for Hair has helped in the past have reached out to Heather and thank her or to donate back to the foundation, she said.

Keeping her hair “was the one thing that I had control over,” Brown said. “The doctors couldn’t take that away from me.”

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