Life in The First Year of An Alopecia Areata Diagnosis - Health - Boston PDF

10/2/2015 Life in the first year of an alopecia areata diagnosis - Health - Boston.
com
Life in the first year of an alopecia
areata diagnosis
OCTOBER 1, 2015 | 9:09 PM
DIALYNN DWYER
519 13
Jean Nagy / Boston.com
She lost her mother and all her hair in the same year.
Christine Wigandt was finishing her junior year at Salem State
in April 2014 when her mother went into a nursing home. Her
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10/2/2015 Life in the first year of an alopecia areata diagnosis - Health - Boston.com
mother was only 52, but with chronic obstructive pulmonary
disease and congestive heart failure, she’d been declining
since Wigandt was in high school.
The 45minute distance between Wigandt and her family felt
like hours. She didn’t bother with her finals.
“I remember that every time my dad would call, I would think it
was because she was dead,” Wigandt said. “So it was sad, it
was hard.”
It was before she left school in May that she noticed a bald
patch toward the bottom of her scalp.
But she was distracted by other stressful events and daily
demands—her mother was back in the hospital, and Wigandt
was driving there every day after work with the Salem State
University Police.
When the school year finished, she moved home to Norwood
and began working her summer job as an intern at the
Registry for Motor Vehicles. Each day after work, she’d go
home and do her work for summer classes.
While she did her homework, the long, brown hair she’d had
her whole life was falling out, drifting down around her.
“I would just sit there and see it all coming out on the kitchen
table,” she said. “And I’d reach out for help with my dad, but he
was so occupied with my mom that it wasn’t a priority. And I
understand why it wasn’t a priority, but I just remember sitting
at home and being like, ‘Oh my God, why?’”
In July, she went to the doctor.
“I took my hair out of the pony tail and a whole bunch of it was
attached to the elastic,” she said. “I was like, ‘This is what’s
happening.’”
She was diagnosed with alopecia areata, an autoimmune
disease in which the immune system attacks hair follicles,
causing hair loss.
Wigandt’s mother died in August. A week later, Wigandt
returned to work, and three weeks later, she moved back to
school.
Looking back, 22yearold Wigandt says she isolated herself
from her peers, still dealing with her mother’s death and her
own hair falling out.
“With everything that was going on, I felt like it was hard to act
like I was in college,” she said.
What is alopecia areata?
Millions of Americans are affected by the autoimmune disease
alopecia areata, according to Dr. Lynne Goldberg, professor of
dermatology, pathology, and laboratory medicine at Boston
University School of Medicine and director of Boston Medical’s
Hair Clinic.
It’s estimated that 1.7 percent of Americans, both men and
women, will get alopecia areata within their lifetime. Patients
with alopecia areata range from having a single lost patch on
their scalp to losing the entire scalp (alopecia areata totalis) to
having total body hair loss (alopecia areata universalis). The
term “alopecia” refers simply to any kind of hair loss, such as
male pattern baldness.
“We don’t know know why people get it, what triggers the
disease, why some people get it and some people don’t,”
Goldberg said. “We know there is a genetic association, and
some of the current research is looking at the genetics of the
disease.”
It isn’t contagious, and other than the hair loss, the patient is
healthy.
“It’s not lifethreatening, but it’s lifealtering,” Goldberg said.
When Wigandt first started showing symptoms, she felt the
healthiest she’d felt in a while.
“I kind of used that at first like my crutch, like, ‘OK, I’m in good
shape, but my hair is falling out. But it’s OK because I’m still in
good shape. I’ll work on this, but I’m still in good shape,’” she
said.
The unpredictability of the disease makes for some of the
hardest patient visits, Goldberg said. It can start with one spot
and stay that way. The hair could even grow back, since the
hair follicles are not destroyed, only shut down as the immune
system attacks them.
Or a patient can rapidly progress from the one spot to losing
the hair all over their body.
“That’s a major psychologic impact on a patient,” Goldberg
said. “It’s very, very difficult.”
Twothirds of people diagnosed are under the age of 30.
Six months after Wigandt noticed the first spot, she was about
70 percent bald. She cut her remaining hair short and began
wearing a wig to work at the police department in December.
Her mom gone, Wigandt’s aunt was there when she cut off her
hair and took her to get the wig.
“When my hair was falling out, my head hurt,” she said. “It
didn’t hurt that bad, but I remember it being really sensitive.”
She lost her eyebrows in March. By June, just over a year
since she noticed the first spot, all her hair, including her
eyelashes were gone.
Wigandt credits her boyfriend, Chris, of two years with helping
her get through the school year.
“I really had a lot of times where I would just break down
crying,” she said. “Even up until this summer, I would always
tell him, ‘I really want to be happy, I’m OK with my mom, I’ve
talked through that. That’s not what’s holding me back. This is
what’s holding me back. I genuinely want to be happy.’”
She didn’t want to wear the wig. She only wore it to her
morning classes—waiting until she was in the parking lot to put
it on—and to her job at the police station.
After she graduated, she only wore it to work.
“When I stopped wearing the wig, that’s when I really started
to feel comfortable,” she said.
She told her colleagues about alopecia areata and went
without a wig at a Rape Aggression Defense Class at the
station in March. In June, she asked her captain if it would be
OK if she stopped wearing the wig to work.
He told her that would be fine, and she hasn’t worn the wig
since.
“It’s great,” she said. “I feel so much better not wearing that
thing.”
9 of 9
Courtesy of Christine Wigandt
Treatment
There is no cure for alopecia areata, but there are some
treatments that have been effective for some patients,
depending on the extent and progression of the disease.
For someone with limited disease, topical steroids can be
used.
“Sometimes we’ll take that steroid and we’ll inject it under the
skin,” Goldberg said. “That’s called an intralesional steroid,
and that’s very effective.”
Wigandt tried both early on. She was hopeful when she had
some regrowth for a little while, but neither ended up working.
Once the disease has progressed to the whole head, Goldberg
said injections are no longer practical.
Then the physician may try contact sensitization therapy—
applying an allergen to the scalp so the reaction can regrow
hair.
Wigandt is currently trying this method, and because of the
allergen, her scalp itches most of the time.
Goldberg said sometimes patients get systemic medications—
a treatment that works throughout the body. But she said when
doing so, doctors and patients have to think not only about
potential side effects, but also what will happen when the
patient stops taking the medication—whether any regrown hair
will remain once the doses stop.
“What our research efforts are going towards is, ‘What’s a
treatment that we know is going to work on all patients?’ And
that’s been the tricky thing,” said Gary Sherwood,
communications director for the National Alopecia Areata
Foundation.
The foundation began in 1991 and focuses on providing
support for alopecia areata patients and their families, as well
as raising awareness and pushing forward research for the
disease.
One of the more hopeful schools of research for a treatment is
tackling the autoimmune aspect of the disease, looking at the
treatments used for other autoimmune diseases like
rheumatoid arthritis. There have been successes in clinical
trials using immunosuppressants, according to Sherwood.
“It puts the immune system to sleep and the hair can grow
back because there’s nothing attacking the follicles,” he said.
But, he said, if someone easily gets sick, they’re not going to
want to have their immune system suppressed.
Still, there’s a long road ahead even if the autoimmune angle
is proved to be 100 percent effective.
“Great,” Sherwood said of the hypothetical. “But, now you
have to get it approved by the FDA for use in alopecia areata
and, more importantly, you’ve got to make it affordable.
Because that is not an inexpensive drug. It’s rather pricey, and
it’s not going to do anyone any good if they can’t afford it.”
Living with it
Having a routine schedule, doing things she enjoys, like
Crossfit, has helped Wigandt feel normal. She also has
connected online with other young alopecia areata patients
through the foundation.
In August, she posted an AMA on Reddit and was contacted
by a student at Emerson who had alopecia areata her whole
life, but had been able to hide it with the hair she had.
But it was getting worse, and she was hitting the point where
she had to shave her head.
“It’s scary,” Wigandt said of that moment. “You’re like, ‘Oh my
womanhood is just on the floor.’”
Wigandt and the Emerson student met when they decided to
travel together to an event in Providence.
Wigandt said she recognized the girl at the train station
immediately because she was bald.
“I was like, ‘Oh, someone my age I can relate to!’” Wigandt
said. There were four people at the event—Bald Girls Do
Lunch, a support program for women with alopecia areata.
At the lunch Wigandt attended, they talked about wigs, wraps,
coping, and everyone shared their story.
“It was great,” she said. “It was just so good to have other
people who were going through the same thing, you know.”
Jean Nagy / Boston.com
Wigandt shared her story in a blog post on the group’s
website.
Though she’s more comfortable than she was when she was
wearing a wig, there are moments where the lack of
awareness about alopecia areata and the value placed on
having hair in society is all too clear to her.
“People have said, ‘You know, you really should wear a wig,’
and stuff like that,” she said. “And I’m like, ‘I don’t want to wear
a wig, and you saying that, is taking me back two months.’ You
know what I mean? Don’t say it. Keep it to yourself.”
Those in the alopecia areata community who decide they do
want a cranial prosthetic or wig often face a big problem—
insurance will not pay for it because it is seen as a lifetime
expense, as opposed to a onetime expense.
“We feel it’s discriminatory if they do it for people with one
disease but not another,” Sherwood said.
The foundation is helping push forward a bill, along
withCalifornia Congressman Jared Huffman, that would
provide a Medicaid benefit for up to $400 every two years for
those who have experienced hair loss for any medical
condition.
Goldberg has testified at the Massachusetts State House on
behalf of alopecia areata patients, asking for a bill to require all
insurance companies to cover cranial prosthesis. There’s no
reason why wigs should only be covered if a patient is going
through chemotherapy, she said.
“If you say to them, ‘Imagine this is your daughter’—a lot of
people took their wigs off at the State House, it was very
impressive—‘I am your daughter and this is how I look and I
am otherwise completely healthy,’” Goldberg said. “It is very
hard to face the world like this. People will make all kinds of
assumptions, that you’re sick, that you’re ill, that you have
cancer, that you’re dying. And you need to be confident in the
way you look in order to carry on your daily life.”
Awareness
September was Alopecia Areata Awareness Month, and
Wigandt hopes more people will learn about it. She plans to
put pamphlets up at her work.
People at the RMV assume, and even ask, if she’s in
treatment. Complete strangers have told her she’ll “get through
it” and given words of encouragement.
She was in line at a HomeGoods when the sales clerk told her
to “keep fighting.”
“I was like, ‘Keep fighting what?’” she said. “I was totally in my
own zone—I’m in HomeGoods, I need to buy a comforter.”
She told the clerk she didn’t have cancer, that she wasn’t in
treatment.
“She was like, ‘Congratulations for beating it’ and I’m like, ‘No,
no, no, it’s called alopecia,’” she said.
Wigandt said she’s thankful she is isn’t sick.
“I just want people to know what alopecia is so that when they
look at me they think, ‘Well, she either has cancer or she has
alopecia,’” she said.
As for the future, Wigandt wants to be a police officer. She
plans to stay in Norwood, close to her family, who have
supported her.
She still hopes to have hair, eyelashes, and eyebrows again. If
only for one, particular day.
“I want it for my wedding one day, and that’s all I ask is my
wedding day,” she said. “If it’s not hair, it’s the ability to look
like I did. Even though I feel confident now, I just want to have
a normal wedding, whenever that happens.”
She said she’d be “over the moon ecstatic” if any of the
immunosuppressant options ends up being promising.
“But if it doesn’t,” she said.”It doesn’t.”

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