THE NATIONAL ALOPECIA AREATA FOUNDATION TIRELESSLY PURSUES ITS MISSION
Some 4.7 million Americans are afflicted with alopecia areata, an autoimmune skin disease in which people’s white blood cells begin attacking hair follicles, resulting in hair loss. Typically, alopecia areata presents with small, round, smooth patches of skin caused by clumps of hair falling out. In roughly 5% of cases, it may progress to total loss of hair on the scalp (alopecia totalis) or to loss of total body hair (alopecia universalis). The course of the disease is unpredictable; hair may grow back in and fall out again many times without a pattern.
Alopecia areata occurs equally in men and women and may strike at any age, including childhood. In some cases it may occur once and never again; in others, there may be lengthy, extended periods between incidences; and in still others, it is persistent or chronic.
There is no FDA-approved treatment specifically for alopecia areata; however, doctors often utilize cortisone injections or topical minoxidil– or anthralin-based creams and ointments, with varying degrees of success.
In 1981 the National Alopecia Areata Foundation (NAAF) was founded to help those with alopecia areata meet the challenges associated with this condition. The foundation has grown over the years and is now the leading voice for the alopecia areata community in the United States. It is also intent on using its resources wisely. NAAF has met all 44 standards of operating excellence from the National Health Council and all 20 standards from the Better Business Bureau’s Wise Giving Alliance, and it spends over 85 percent of donations on programs.
hairlosschat.com spoke with NAAF’s president and CEO, Vicki Kalabokes, about the foundation, its work and its goals.
HLDC: Can you tell me a little about the programs and resources that NAAF offers?
Vicki Kalabokes: NAAF is the largest nonprofit resource for information about alopecia areata, for both children and adults. We have a very clear mission: to support people with any form of alopecia areata, to raise awareness of alopecia areata and to fund and encourage research to help people with alopecia areata.
We have been funding research since 1985, and we really started from the ground floor. There wasn’t much research prior to this, and so we had to start with basic biology. For example, no one even knew much about how a hair follicle worked. So first we had to learn basic information about how hair follicles work. And from that research we grew. Eventually, scientists developed a mouse model of alopecia areata. Dr. Angela Christiano’s work in genetics of alopecia areata has been very important, leading to a July 2010 article in Nature detailing her discovery of eight genes that are associated with the disease. Our efforts also led to Dr. Amos Gilhar’s discovery that alopecia areata is an autoimmune disease, and Dr. Christiano has now found that the way the immune system attacks the follicle is related to other autoimmune diseases, such as type 1 diabetes, rheumatoid arthritis and celiac disease.
We are very proud that we were able to push for government funding of a National Alopecia Areata Registry, which now includes 9,000 people with alopecia areata, of which some 3,000 have given blood samples. So there are a lot of data that are now available for research, and much of the alopecia areata research is because of NAAF’s efforts.
We’re very strategic about our research funding. I mentioned that there is a relationship between alopecia areata and type 1 diabetes, so we have focused a good deal of our new research in a lab at the University of Colorado that is doing work in type 1 diabetes; we’ll be able to “piggyback” by funding a fellow in that lab who is doing NIH-funded research to help further determine the immune mechanisms of the disease. This will eventually lead to treatment options. You know, we have 5 million people in the United States with alopecia areata, so it’s a tremendous market — but there is not an FDA-approved drug for treatment yet.
In terms of awareness, we are constantly sending out news releases, planning events, advocating on Capitol Hill, working with the media. We’re very fortunate to have Charlie Villanueva, from the Detroit Pistons, who does “meet-and-greets” with kids with alopecia areata; Kayla Martell, this year’s Miss Delaware; and Allison Waggoner, of Shop NBC, to help us.
And every year we have a new theme for Alopecia Areata Awareness Month in September; this year it’s “Go to Bat for Alopecia Areata,” and we’re working with Major League Baseball teams to have awareness opportunities at games.
Support for those with alopecia areata is key
HLDC: What about your support programs?
VK: We have 60 support groups throughout the country, with 30 more internationally. We coordinate them and assist support group leaders. We also have information packets; newsletters; e-newsletters; a patient conference that attracts about 1,000 people; including 350 kids; and much more. One of our services is our marketplace, where we sell items that help people with alopecia areata make it through the day — things such as temporary eyebrow tattoos and wig stands for traveling. We don’t make a profit on these; we just link to them because there is a real need for specialized products for our people. We also offer our Ascot Fund, which helps people get hairpieces who otherwise would not be able to afford them. This can have a huge impact. For example, we had a 14-year-old girl who recently got a wig through the program, and the change in her body language was unbelievable. She was so happy to have a wig and told me she used to have one, but when she was 9, some kids took it from her and burned it. And we had another family in which the husband, who had always been the breadwinner, was suddenly disabled, and his wife, who has alopecia areata, had to get a job.
Her entire outlook changed when she got the wig, which gave her more confidence and helped her get the job that her family needed. Her whole life changed.
HLDC: What do you think people with alopecia areata are looking for when they establish contact with NAAF?
VK: The first thing is “How do I deal with this?” They are usually so happy just to know that they are not alone. Most people don’t know there are others with alopecia areata, but they learn that there’s a huge universe they never knew about.
HLDC: What are some of NAAF’s future (short- or long-term) goals?
VK: We are very focused on our seven-year strategic plan, which is designed to help move forward the Treatment Development Program. This is a major, $6 million plan that’s so important because we need an effective treatment program for people with alopecia areata. It is very carefully planned, and yet has plenty of room for change, so that if, say, an unexpected development takes place in year two, we can accommodate it in year three.
Society and alopecia areata
HLDC: Although men with traditional male pattern baldness still often experience a feeling of some stigma associated with hair loss, it does seem that society as a whole has grown more accepting of traditional baldness (for example, more bald movie stars as leading men, a “coolness” attached to a shaved-head look, and so forth) Do you feel that this greater acceptance extends to individuals with forms of alopecia areata as well?
VK: Yes, definitely there has been some change. I think, however, that there’s been less change among the kids. They still get teased or bullied for having no hair. That’s something that we work on tremendously. Our school information packets are so important; they help teach about the disease and educate, which hopefully cuts down on the teasing. Also, we did a survey of kids with alopecia areata and asked them how others perceive them — something like 80 percent of the kids answered that people, especially adults, stare at them.
In the adult population, I think the loss of hair on the scalp is accepted more, but I believe that men with alopecia universalis still have a really difficult time. It’s kind of considered OK for them to lose scalp hair but not OK to lose eyebrows and eyelashes. It’s difficult for women, too, but women at least have more experience with eye makeup. And for everyone with alopecia universalis, losing so much facial definition is hard.
HLDC: I know this may be a difficult question to answer, as it requires a generalization, but for those with alopecia areata, what do you think is a bigger obstacle — how they feel about having alopecia areata or how they believe other people will feel about alopecia areata?
VK: They go through the five stages of grieving, so it really depends on the stage they’re in.
But the more they come to accept it, the more others do, too. Others respond to how you are responding to yourself. Feeling self-confident is crucial.
HLDC: What would you say are the major emotional or psychological issues that arise for those with alopecia areata? Are they different from the ones that arise for children with alopecia areata?
VK: Kids have a different sense of self; before age 6, they’re not as cognizant of themselves. In adolescence, it can be a real issue. But it can actually be more traumatic for those who first get it as adults; they’re not ready for it and have to work harder to develop their coping skills.
HLDC: What else would you like to tell us?
VK: We hope more people find us and that more people understand what alopecia areata is and become more accepting of people with it.
For additional information, go to www.naaf.org.