The volunteer-run Australia Alopecia Areata Foundation (AAAF) raises awareness about a condition that causes hair to fall out in patches. The foundation also provides support programs for those living with alopecia areata.
Retail Pharmacy Assistants spoke with AAAF President Chel Campbell, who says building community understanding around the condition is essential to amplifying the voices of those in need, to improve education and healthcare.
Tell us about your role and how you came to volunteer at AAAF.
Twenty-four years ago, my journey with alopecia areata started. My son, then 20 months old, had a chicken pox scab that rested on the hairline of his forehead. Within days, his hair had fallen out and was starting to recede down the centre of his scalp. With no knowledge of the cause and no visible sign of hair regrowth, off we went to the dermatologist. On inspecting my son, the conclusion was alopecia areata, and my journey began.
As a family, we reviewed the treatments offered and decided that these treatments were not for us, so we went about understanding as much as possible about how to make our child’s life as ‘normal’ as every other child his age. We also need to take a moment and reflect back to the time – this was when it was more acceptable in society for a man to do a comb-over than to be without scalp hair. So, imagine the stigma associated around a baby, toddler, adolescent with hair loss. It was many years later that appearance diversity became used in sentences.
So, in 2010, I bit the bullet and founded the Australia Alopecia Areata Foundation and took on the role of President, which I maintain today. However, AAAF would not exist today without the AAAF Committee, which consists of a group of dedicated individuals whose lives have all been touched in some way by alopecia areata. These passionate volunteers contribute their time, skills and effort to help us achieve our missions and help people with alopecia areata and their families – and to them I’m truly grateful.
What are the foundation’s missions and goals?
Like everyone I’ve met to date, unless you, a family member or a peer have experienced alopecia areata first-hand, then the words are just unknown. From 2010 to 2015, the most common question into AAAF was, ‘Am I the only person with this?’ A goal of AAAF is to ensure no person feels alone through their journey, and we achieve this by remaining true to our missions.
Everything we do at AAAF is aligned with one of our three mission statements:
Support. Providing support to those with all forms of alopecia areata, and their families.
Awareness. Informing the public and creating awareness of alopecia areata.
Research. Supporting research into a cure or acceptable treatment for alopecia areata.
What is alopecia areata, and what effects can the condition have on mental health?
Alopecia areata is an auto-immune disease that results in hair loss on the scalp and elsewhere on the body. It can range from small, individual smooth patches of hair loss to total loss of all hair on the body, including ear and nose hair. Alopecia areata is not uncommon, and current estimates suggest that two per cent of the population will be affected by the condition at some point in their lifetime. It can affect people of all ages, genders and ethnicity, but most commonly presents during childhood.
Alopecia areata … it’s life-changing … can be a lifelong condition, and can deeply affect self-image, self-esteem, confidence and even mental health.
People who have alopecia areata, and their family members, often experience a variety of emotions:
- Feeling alone, withdrawn, and isolated.
- Loss and grief.
- Fear that others may find out you have the disease.
- Scared that others may find out that you wear a wig.
- Sadness and depression.
- Anger.
- Embarrassment.
- Guilt or self-blame that you somehow brought the disease on yourself.
- Guilt related to how the disease is affecting family members and loved ones.
- Helplessness in regard to searching for answers or cure (going to extremes).
- For parents, guilt that they may have genetically contributed to their child’s disease.
- For siblings and other family members, shame and hurt because the disease has also affected their live.
These emotions are very normal but can have a negative impact on the lives of individuals if not addressed. Support groups can help to manage some of these feelings and help towards have a positive journey with this condition.
Why is it important to shine the awareness spotlight on alopecia areata?
For some individuals, having alopecia areata is an exhausting and all-consuming mental and physical experience. It can impact all facets of your life: day-to-day activities, social and familial connections, as well as your ability to form intimate relationships.
Social media has helped to bring alopecia awareness to the internet. The online alopecia community is such an amazing resource for anyone wanting to feel uplifted, informed, supported and connected to thousands of other people out there with alopecia, but it’s just one channel.
Alopecia areata needs to be known and understood so that AAAF is able to change focus from explaining the disease to giving the opportunity to not only make an individual difference but also to amplify the voices of those in need, to make a difference at a healthcare and education system level.
Can you tell us about Alopecia Areata Awareness Week (the third week of November) and the key messages you hope to spread?
Alopecia Areata Awareness Week was born to bring focus to the disease. Having a concentrated week allows our supporters and our community to feel connected and to play their part, no matter how big or small in having a voice.
Our community find it very personal and rewarding to be able to assist someone in need. At the same time, listening to the voice of lived experience enables our organisation to see what opportunities exist in Australia to make life better for those living with alopecia areata.
What events are you holding through Alopecia Awareness Week?
AAAF key activities for the community to get involved in are the ‘Boldest Bald Morning Tea’ and ‘Crazy Hair Day’, with the big drawcard being the AAAdventure Camp. This camp brings children from all over Australia together, and in many cases is the first time a child has met another child with alopecia areata.
Each state runs their local support group catch-ups, which consist of coffee meetings or diners.
Why is research into alopecia areata important? How has the AAAF helped to support further research?
To answer the question around research, it needs to be understood that the same five treatments have been offered to patients since I started my journey in 1998, and this has mainly been due to the lack of understanding around the hair lifecycle and the triggers for alopecia areata.
Those five treatments are:
- Ultraviolet light treatment – here a series of sessions are used to target the skin cells.
- Cortisone injections into the scalp. A series of five treatments, initially of 50 injections.
- Applying a chemical DPCP [diphencyprone immunotherapy] directly to the scalp. Here the scalp becomes allergic to itself once the blisters heel and peel. The risk here is that it’s very uncomfortable, prone to infection.
- Steroid treatments can promote hair growth.
- Wearing a hat.
However, a breakthrough appeared when a patient was being treated by a JAK [Janus kinase] inhibitor for another condition, and that patient grew back their hair. So, for the last seven years, trials have been held around the world, and many led here in Australia, to develop the right JAK inhibitor for alopecia areata. In making history in June 2022, the first drug was FDA [US] approved for its use in alopecia areata.
AAAF has been funding research since our conception. Local trials have placed many patients into trials and progressed the studies to the position that they’re in today. AAAF is working with pharmaceutical companies to bring the first alopecia areata drug onto the PBS.
Trials are continuing, as there are many types of alopecia areata. They’re generally grouped by what area of the body they affect or the pattern of the hair loss, and through the trials, it’s been discovered that different formulations are required for the different categories associated with alopecia areata. The three most common forms are:
- Alopecia areata. Patchy loss of hair on the scalp.
- Alopecia totalis. Complete or mostly complete loss of hair on the scalp.
- Alopecia universalis. Complete loss of all hair, including brows, lashes and body hair
What makes it more complex is that in some individuals, alopecia areata may present as one to five patches of hair loss that resolve themselves within six to 12 months, with no treatment. In others, alopecia areata becomes a chronic disorder characterised by multiple hair loss patches with relapse and remission occurring over the course of many years, once again with no treatment. It may also present as total or universal hair loss, as described above. All of this unpredictability needs to be factored into the research.
Psychological research is also a priority, and a multitude of our resources are the results coming out of the learnings.
How does the foundation provide support to those with all forms of alopecia and their families?
The relationship you have with your dermatologist and GP doesn’t provide all the emotional support you need. It might be comforting to speak with people who’ve had similar experiences. This is where support groups come in.
AAAF support groups bridge the gap between your treatment and your need for emotional support. It’s where you can meet and share with people experiencing the same emotions as you. Here, you can find strength in others’ experiences, learn about coping strategies, and receive first-hand information from others who possibly asked the same questions at the start of their journey.
AAAF runs multiple programs and competitions throughout each year. The aim of this is to help reduce financial and emotional stress while enabling children, young people, adults and their support networks to develop their strengths and skills.
We also run advocacy and awareness campaigns to reduce stigma and promote connecting.
Can you tell us a little about the ‘Wigs For Kids’ and ‘No Hair We Care’ programs you run? How have these been received?
AAAF’s Wigs For Kids initiative was launched in 2012 to provide an educational program and to grant a wig for children to experience if they want to be wearing a wig. Wigs can cost upward of $6000, which is a huge financial burden on families, so the child needs to be sure it’s the right choice for themselves. The Wigs For Kids program is self-funded by our ‘Donate Hair’ program, where individuals donate 36cm-plus of their hair. AAAF sells this to reputable wig makers, with all proceeds going directly back to Wigs For Kids.
AAAF launched the No Hair We Care program in 2020 as we recognised that those in the Covid lockdown were struggling. So, a care pack including headwear, skincare, books, DVDs, makeup, jewellery, information and resources to support you on your journey alone was developed. More than 350 of these packs have been dispatched to date.
How can retail pharmacy assistants help to support the work that you do?
For retail pharmacy staff, it’s imperative to know there are many reasons for hair loss, and it’s best not to make assumptions about someone based on their appearance.
We have a huge range of information on our website. We also have support ambassadors, and we hold webinars, so if any of your teams are interested in hearing more about alopecia areata and lived experiences, we’d be happy to arrange a meeting.
Find out more about Australia Alopecia Areata Foundation here: aaaf.org.au
This feature was originally published in the Nov/Dec issue of Retail Pharmacy Assistants e-magazine.
