Resources for Patients With Alopecia Areata

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Any views and opinions expressed are those of the author(s) and/or participants and do not necessarily reflect the views, policy, or position of The Dermatologist or HMP Global, their employees, and affiliates. 

Patients with alopecia areata (AA) face multiple challenges as they come to understand their diagnosis. In addition to learning about the autoimmune disease and treatment options, they may be recognizing the unpredictable and chronic nature of their condition and grappling with the loss of self-identity that comes with hair loss. Anxiety and depression are more prevalent in patients with AA than in the general population.¹ The psychosocial impacts of AA can be isolating, leading to anxiety in social situations, reduced interactions with friends, and missed school and work. AA can be a deeply traumatic experience resulting in emotional pain and social isolation.

The National Alopecia Areata Foundation (NAAF) offers support and educational resources, as well as community, to patients and families throughout their journey living with AA. In this interview, Dr Maryanne Makredes Senna highlights the variety of NAAF resources available to increase awareness and understanding of AA and how dermatologists can use them to help their patients.

The Dermatologist: NAAF offers patient-facing webinars on the latest treatment developments, living with the disease, and tips for wigs and hair pieces.² Do you recommend that patients watch some of these webinars before discussing new treatments with their dermatologist so they can have an informed conversation?

Dr Senna: All the time! In fact, for patients considering treatment with Janus kinase inhibitors, I even have a handout I provide that helps direct them to the webinars on this topic. They are very well done and an excellent resource for patients in general.

The Dermatologist: In-person and virtual support groups,³ one-on-one phone support,⁴ and a youth mentor program⁵ are also available through NAAF. How important is it for patients living with AA, and parents of children with AA, to connect?

Dr Senna: Incredibly important. Of course, each person with AA will experience the condition differently and has different needs and wants regarding the type of support that works best for them. That being said, these NAAF resources are really critical to people with AA who wish to connect with others who have the condition. Particularly for youths, linking with other people their age who are dealing with AA can have a very positive impact.

The Dermatologist: NAAF produces patient brochures with basic information in English and Spanish.6 How can dermatologists use these resources to help their patients with AA?

Dr Senna: Sometimes it is hard for patients to “take everything in” during a doctor’s visit, and these brochures highlight some of the most important features of AA. This is particularly true for patients with newly diagnosed AA. Incorporating these brochures into clinical care provides another resource for patients.

The Dermatologist: An annual NAAF conference is another opportunity for patients to meet and learn from others living with the disease, as well as medical and scientific leaders in the field.⁷ How can dermatologists and patients get involved?

Dr Senna: I highly recommend this meeting to all people with AA and their families. Not only is the meeting a wonderful way to have solidarity with others dealing with the condition, but it is also a meaningful learning opportunity. Dermatologists and patients can register on the NAAF website, and although registration is not yet open for this year’s conference, people can sign up online to stay informed of the meeting and registration.

References

1. King B, Pezalla E, Fung S, etal. Overview of alopecia areata for managed care and payer stakeholders in the United States. J Manag Care Spec Pharm. 2023;29(7):848-856. doi:10.18553/jmcp.2023.22371
2. Watch & learn. National Alopecia Areata Foundation. Accessed November 2, 2023. https://www.naaf.org/watch-learn/?watch_learn_type=webinar
3. Support groups.National Alopecia Areata Foundation. Accessed November 2, 2023. https://www.naaf.org/find-support/support-groups
4. One-on-one phone support. National Alopecia Areata Foundation. Accessed November 2, 2023. https://www.naaf.org/one-on-one-phone-support
5. NAAF youth mentor program. National Alopecia Areata Foundation. Accessed November 2, 2023. https://www.naaf.org/youth-mentor-program
6. NAAF patient brochures. National Alopecia Areata Foundation. Accessed November 2, 2023. https://www.naaf.org/patient-brochures
7. Patient conference. National Alopecia Areata Foundation. Accessed November 2, 2023. https://www.naaf.org/conference