Seeking Support for Alopecia Areata? NAAF Can Help

There’s no need to go it alone. NAAF support systems can help.

At any given time, about 700,000 people in the United States have active alopecia areata (AA), so if you have AA or you care about someone who does, you’re not alone. It might seem like it, but you’re not.

The emotional impact of living with AA can be significant. It can have a negative effect on your quality of life, like making you feel different and self-conscious. Then, this can lead to a domino effect of isolation, depression, or anxiety. If you’re a parent of a child with AA, you might feel guilty, thinking you somehow caused the disease. You might become stressed or anxious if you feel you need to protect your child from negative effects. But it doesn’t have to be that way. There are others who have been where you are now – and they want to help. One place to start is with the NAAF website. There, you can find information on how to find a support group, one-on-one telephone support, and more.

Support comes in different forms

Mention the term “support group” to some people and they imagine a group sitting in a circle in a school gym or church basement, taking turns talking about what is happening to them. Bring up one-on-one support and they may think about a traditional therapist’s office. But help can come in many forms that suit different needs and personalities, especially for children.

For people with AA, support may include:

  • Outings so group members get together to not only discuss problems but enjoy planned activities
  • Regular group meetings where children play together while their parents talk among themselves or with speakers or facilitators
  • Online meetings that take place on a virtual platform, like Zoom
  • Formal gatherings, like seminars or conferences
  • One-on-one match-ups where the pair can speak on the phone or in person as frequently as they need
  • Telephone support with a NAAF volunteer

Emotional support through play and activities

It’s common to feel alone whether you have just developed AA or you’ve been hiding it from others for a while. You  probably don’t know anyone else with the disease. Support groups or one-on-one conversations can offer a safe space to share your feelings and experiences, ask questions, and learn from others who truly know what it is like to live with it.

Young children and teens with AA are learning how to navigate their way in the world, which can be difficult enough for any child. They need to know there are others just like them. Eighteen years ago, Heather Stephen’s daughter, Kenna, lost her hair at the age of two. They lived in Denver, CO, and didn’t know anyone else with the condition and 18 years ago, online searching wasn’t as robust as it is now.

“We were told our child had an autoimmune disease that was incurable,” Heather explains. “And then we walked out of the doctor’s office and we were alone. I remember walking around, looking at kids everywhere we would go, just wanting to find or see a child that looked like mine. It was very lonely and very isolating.” By chance, they ran into someone who was part of a local Denver-area children’s support group, Heather says, and it became a lifeline for their family.

“The leaders were wonderful and it was a chance for us, as parents, to wrap our minds around what the future could look like. To see other families who were ahead in the journey was such a big deal. And to see older kids living really well with the condition, that was a game-changer for us.” Meet-ups were recreational, in parks, for example, not meetings where people sat and talked, Heather points out. This way, the kids had the chance to play with each other and the parents could have side conversations about the topics they were concerned about at the time.

Eventually, Kenna stopped attending that group because her hair grew back, but it fell out again in seventh grade. She then joined another alopecia areata support group, this time one geared towards preteen and teenage girls. “That was a super positive experience,” she says. “I made a lot of good friends, and that’s when, I would say, I really got plugged into the community myself, as opposed to just with my parents.”

Practical support

Aside from the valuable emotional support you can get from a group or one-on-one, there is a lot of important practical support. You can learn from others what they have done for treatments, what worked for them, and what didn’t. Of course, treatment success varies considerably, so their experiences won’t necessarily be yours, but talking about them gives you an idea of what is involved. This can help you come up with questions for your doctor and discuss how to proceed.

Other practical advice can include how to cover your head, where and how to buy a wig if you wish, how to use stylish head coverings, and so much more. Parents can learn how to communicate with school staff and parents of other children who don’t have AA, and even how to deal with bullying if that happens.

Conferences and more formal types of support

NAAF offers people living with AA and their families the opportunity to meet up at national conferences, which take place in different cities each year. Heather found that kind of support invaluable. “ What we found was the Denver-area children’s group was our lifeline here in Colorado, but the next big level of support for us were the NAAF conferences,” she says. “They were incredible experiences. We were able to go with a couple of our other daughters and my mother-in-law. Every time I left a conference, I felt empowered, inspired, and encouraged – better equipped to help Kenna.”  One thing that stood out at the conferences, Heather says, were the activities. For example, if Kenna wanted to swim in the pool at the conference hotel, the pool would be full of kids who all looked like her. “It’s so good to have that representation.”

Support when you least expect to need it

Sometimes, the support comes years after you start connecting with others with AA. “Being a part of a support group isn’t even necessarily the moments when you’re there,” Kenna says. “It’s more like building connections with people who are going through the same thing. So maybe if there’s a moment you feel like you need extra support, or a moment where you do need help or you’re feeling a little bit worse about yourself, you have those people to lean on.” It’s not always just a formal support group setting that’s helpful; it’s building that community that can help you later.

“You don’t always know when you’ll need that help,” Kenna explains. “You might be going along and everything’s going fine. And then somebody says something, or you see something and all of a sudden you think, I need to talk about this to somebody.”

Going a full circle

Remember that “little kids” group that Kenna attended 18 years ago? Now, Kenna’s parents run it. “We want to give back to the community that was there for us the whole time, seeing us through,” Heather explains. As for Kenna, “I think it’s cool for those parents and kids to see somebody like me who’s been through it. I’m functioning and thriving. It’s meaningful for them and it’s super meaningful for me.”

Kenna acts as a mentor now, showing current group members how well she is doing. “I think it’s just cool for those parents and kids to be able to see me, somebody who’s been through it, functioning and thriving. I think it’s meaningful for them and it’s also super meaningful for me.”

To learn about how to access NAAF’s support resources, visit the Get Support page.