A strange disease that can turn a young life inside out A strange disease that can turn a young life inside out
Johnnie Umoh wanted to fix what had happened to his teenage daughter, but he felt helpless because he didn’t understand her disease. He also... A strange disease that can turn a young life inside out
Alopecia areata is an autoimmune disease that's defined as the loss of hair on the scalp and elsewhere on the body. Photo courtesy of the National Alopecia Areata Foundation

Alopecia areata is an autoimmune disease that’s defined as the loss of hair on the scalp and elsewhere on the body. Photo courtesy of the National Alopecia Areata Foundation

Johnnie Umoh wanted to fix what had happened to his teenage daughter, but he felt helpless because he didn’t understand her disease.

He also wanted to protect her from what might lie ahead, because so much had happened already. She had rapidly lost all her hair, with no certainty it would ever grow back permanently.

Alexis, 14, a freshman at Westside High School in Augusta, has alopecia areata. Her hair began falling out at age 9.

Alopecia areata is a highly unpredictable condition that attacks millions of Americans.

The autoimmune disease is defined as the loss of hair on the scalp and elsewhere on the body. It causes hair follicles to produce very small or no visible hair above the skin’s surface.

Hair can grow back in — or fall out again — at any time. The disease can progress to total loss of hair on the scalp, and sometimes on the face and body as well. There is no cure.

Alopecia areata is not related to male or female pattern baldness, the common kind of hair loss seen in adults. Instead, it’s a real disease, and it affects people regardless of racial background, sex or age. It can be particularly tough when it hits the young.

 

Parents rally round daughter

 

Alexis is a cheerleader for her school, and she dreams of becoming a doctor someday.

Her mother, Patricia, remembers her daughter with curly hair and ponytails. When Alexis developed bare spots on her scalp, and eventually lost all her hair, Patricia feared the girl might have cancer.

Since Alexis’ diagnosis of alopecia areata, Patricia and Johnnie no longer see their daughter as ill, but rather in need of support from family and friends.

Danielle Daniely

Danielle Daniely

But this disease has not been easy for Alexis. Having to face the reality of living with alopecia areata as a teen, Alexis actually considered suicide at one point, her parents say.

Knowing Alexis’ feelings of grief and fear, the Umoh family became proactive in seeking help for her. They attended an alopecia areata support group in February at Georgia Regents University’s Cancer Center in Augusta.

Her support entourage included her parents, brothers and sister, friends, teachers, guidance counselor and her cheerleading coach.

At the support meeting, other individuals with alopecia areata and parents of children with the disease gathered around a long table with Danielle Daniely, 34, a self-titled “alopecian” who organized the group and has lived with the disease most of her life.

Daniely was diagnosed at age 8, and remembers having more quarter-sized bald spots on her head than hair. By age 25, left with only a “Mohawk” cluster of hair on top of her head, she decided to shave her head completely. Her hair has never grown back.

 

Hair replacement devices

For people who lose their hair, there have long been substitutes, and today such devices are often much more sophisticated and realistic than the traditional wig.

Alexis, the teenager, wears a deep black cranial hair prosthesis, which provides hair long enough to touch over her shoulders and long bangs that cover her eyebrow area.

The unit was donated to Alexis by the Hair Club for Kids at no cost to her family.

Her parents say they are concerned about how Alexis will be able to handle the cost of a prosthesis when she turns 18 and is no longer eligible for a free one.

Parents of children with alopecia areata still hope the children’s hair will grow back naturally, which is possible, or that a treatment or cure will be found.

But any medical solution has proved elusive.

“The FDA has no approved treatment for alopecia areata,” says Gary Sherwood, spokesman for the National Alopecia Areata Foundation (NAAF). “There are some dermatologists who have found success growing back a patient’s hair within their practices, but nothing 100 percent of the time,” he says.

One of five people with alopecia areata report having another family member with the disease. Photo courtesy of the National Alopecia Areata Foundation

One of five people with alopecia areata report having another family member with the disease. Photo courtesy of the National Alopecia Areata Foundation

Daniely set her own course to enter into the medical profession and to study autoimmunity. She is a biological safety officer at GRU and holds a doctorate in genomic medicine.

“One out of four people have the predisposition markers for alopecia areata, and the disease can be triggered by hereditary or environmental factors,” she says.

Daniely says the disease occurs when a person’s autoimmune system is over-functioning. It sees hair follicles as a threat to the body and therefore destroys their growth.

NAAF says one of five people with alopecia areata report having another family member with the disease.

Funding for research has been slow. “If the majority of the population is needing funding for, for example, diabetes or cardiology research, there is plenty of funding,” says Daniely, “but there is not a wealth of funding for alopecia areata or other skin diseases.”

NAAF in 2012 created the Alopecia Areata Legislative Liaison Program to advance research and support for a treatment development program.

Liaisons from 11 states joined NAAF staff members in Washington to support a 2015 allocation for $32 billion to be used by the National Institutes of Health for alopecia areata medical research, including a research grant to Columbia University from the National Institute of  Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

In addition, NAAF is requesting that the federal Centers for Medicare and Medicaid Services rewrite its current policy to make Medicare benefits available to patients who require a cranial hair prosthesis as a result of alopecia areata.

At the moment, Medicare covers the cost of such a prosthesis only for “secondary alopecia” — when an individual experiences hair loss as a result of chemotherapy.

 

Seeking a change in policy

 

For now, individuals face the health care costs of treating alopecia areata and, if the individual chooses, wearing a cranial prosthesis.

“You need to work with your dermatologist to express the medical necessity of having hair in society,” said Labrisha Doran, who works in the health insurance industry and is also an NAAF alopecia support group leader in Atlanta. She said there is health care coverage for treating alopecia areata and money available for cranial prostheses if the treatment and equipment is “in network.”

Private insurers take their cue from government services like Medicare and Medicaid, says Sherwood. “Again, they may provide a cranial prosthesis for someone going through chemo but don’t always provide one for alopecia areata,” he said.

Health insurance companies are looking at alopecia areata as a “rest of your life” ongoing expense, and that is discriminatory, says Sherwood. “We are trying to change that.”

Individuals face the health care costs of treating alopecia areata and, if the individual chooses, wearing a cranial prosthesis.

Individuals face the health care costs of treating alopecia areata and, if the individual chooses, wearing a cranial prosthesis.

If cranial prostheses are not available through insurance or a private organization, specialty salons can be of service to individuals with alopecia areata.

One is Jentis Studios in Marietta. Owner Curtis Jones says his salon can create a full cranial hair cap for a client who has complete hair loss, or “toppers” for a client with only patches of hair loss on the scalp.

The cost involved with custom hair units are based upon the expected longevity of the unit purchased, says Jones. It can range from hundreds of dollars for a unit that will last for two or three months, to thousands of dollars for a premium custom hair unit to be used for a lifetime.

Jones says his personal reward is when he sees the face of a client with alopecia areata after the hair unit is placed for the first time. “It is remarkable how great an individual feels when they look into a mirror and see hair on their head again,” said Jones.

To offset the expense of a cranial prosthesis or hair unit, NAAF offers the Ascot Fund for up to $500 once every 12 months. There are two requirements: a need for financial assistance and a diagnosis by a doctor that the individual has alopecia areata.

 

There are four other alopecia areata support groups in Georgia, in Atlanta, Gwinnett County, Dawsonville and Ringgold. In Atlanta, contact Labrisha Doran at (678) 521-2109; in Gwinnett County, contact Aaron Williams at (678) 367-1090; in Dawsonville, contact Jessica Faulkner at (770) 362-2206; and in Ringgold, contact Sara Bello at (706) 841-0268.  

For more information about the Augusta Alopecia Areata Journey support group, contact Danielle Daniely at (706) 495-4174 or email alopeciajourney.augustaga@ gmail.com. The Augusta group will meet once a month at the GRU Cancer Research Center, 1411 Laney Walker Blvd., Augusta, Ga 30912. Watch for dates and time on their Facebook page at https://www.facebook.com/ AlopeciaJourneyAugustaGA.  

For more information about the National Alopecia Areata Foundation (NAAF) and its programs, conferences, research and legislative efforts, go to naaf.org or call (415) 472-3780 or email info@naaf.org.

 

Sharon Dunten is a freelancer writer and photographer based out of Atlanta.  She is also the president of the Society of Professional Journalists – Georgia.  

 


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