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What People Living with Alopecia Areata Want You to Know: Patient Advocacy Groups Q&A

August 25th, 2021

Throughout our Summer Series, we’ve focused on providing facts about some of the physical and psychosocial symptoms of alopecia areata. We hope we have educated and enlightened along the way.

While symptoms are important, there are many other aspects of living with this challenging autoimmune disease that has no FDA approved treatments: Tenacity. Adaptability. Hope.

Patient advocacy and support groups are on the front lines for those around the world impacted by alopecia areata, providing access to information, resources, support programs and the comfort that comes from knowing “You are not alone.”

For our final blog in the Summer Series, “Alopecia Areata Impacts: Learn the Whole Story,” we reached out to these groups to get a sense of what their members would like to share about their disease and the process of clinical trials to develop new treatments.

What they wish everyone understood

NAAF: Alopecia areata is more common than people think.  It affects as many as 6.9 million Americans and has a lifetime risk of 2.1%.

BGDL: When you see a healthy child or a woman with extensive or complete hair loss, remember the words alopecia areata. Your default (knee-jerk, automatic) assumption that the bald condition in women and children is always due to chemotherapy is likely to be wrong.

CANNAF: That it’s not just hair loss. Alopecia areata can have a serious psychosocial impact on those affected and their families. This said, people with alopecia areata don’t want to be treated differently than anyone else. It can be the questions and comments others assume are helpful or kind that can further encourage the common feelings of isolation, shame, and fear.

Thoughts about clinical trials

NAAF: A significant number of our community members have been remarkably willing to participate in clinical trials, patient roundtables, etc.

BGDL: Overall, our members are encouraged by the current progress being made in clinical research and the work in clinical trials if they’ve heard about it. For some members, alopecia areata is the worst thing that has ever happened to them and they’ll do anything to regrow hair. Others are interested in being in a trial for the scientific benefit, to enable advances that will spare future children from going through what they went through (bullying in particular).

CANAAF: If anything brings our members together, it is shared understanding of the burden of living with alopecia areata and a desire to create change for this community. To have more options, not only for themselves but for the alopecia areata community as a whole. Clinical trials are a big part of that for many of our members since they can be involved in something bigger, encourage change, and help provide hope to those struggling with alopecia areata. In addition to re-growing hair, those who participate in clinical trials feel purposeful in knowing they are supporting future generations with alopecia areata by aiding the search for a cure. Hearing about others’ participation in clinical trials and new treatments is often a hot topic of discussion in our support groups.

Sharing information is key

NAAF: Current research information is shared with our community through social media, a news page on our website, a bi-monthly eNews and a bi-annual hard copy newsletter.

BGDL: The best platforms for this are via our blog, in one-on-one conversations and via targeted emails to members who have opted in for research information.

CANAAF: We believe in empowering our community to make informed decisions about treatments and clinical trials. Not everyone chooses to treat their alopecia areata, but those who do should feel confident in their choice to do so. We post research articles updating on the progress of current research and clinical trials so our community can stay up to date. Our newsletters keep our membership informed of these new updates. We also have a section with info about clinical trials on our website.

Demonstrating resilience daily

NAAF: The alopecia areata experience is different for all affected.  Some handle it with amazing resilience; some need more help and counseling.  NAAF is there to provide whatever level of support is most desired by each individual patient.

BGDL: Our members seem ready to move forward with practical advice for living well with their alopecia areata, having moved beyond the early stages of shock and grief. Their focus in online meetings has been looking forward for solutions, sharing ideas and being able to laugh at prior situations that in hindsight are slapstick funny. The variables of alopecia areata throw too many curve balls for too many. Picking up the phone or attending an in-person lunch to get support takes determination and a willingness to listen and learn. Starting from that baseline is a good prognosticator for positive living and greater resilience.

CANAAF: Resilience is a quality often used to describe those with alopecia areata. As we know, alopecia areata is often a cyclical disease characterized by patterns of hair loss and regrowth. The ability of the CANAAF community to thrive amidst this overwhelming uncertainty is a special kind of resilience. Some find living with alopecia areata extremely difficult, while others seem to have embraced their hair loss. Many find the journey like a roller coaster of emotions. CANAAF aims to help make the journey feel a little easier. That is why our motto is: Predictable for an Unpredictable Disease. We help provide stability during the alopecia areata journey, by offering information, resources, and community.

Many thanks to these groups for providing feedback for this blog:

  • National Alopecia Areata Foundation (NAAF, USA)
  • Bald Girls Do Lunch
  • Canadian National Alopecia Areata Foundation (CANAAF)

Concert envisions a whole new future for alopecia areata patients, and we are proud to be developing a potential new treatment for this disease that could help make this future a reality. Until then, we’ll continue to work to raise awareness of the overall impact of alopecia areata and the challenges faced by people with alopecia areata.

Follow this blog and our social channels, @ConcertPharma and LinkedIn, for the upcoming Light It Up Blue 4 Alopecia Areata program, coming in September 2021 for Alopecia Areata Awareness Month.

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