Your hairstyle might be one of the ways you express your personality. From time to time, you might restyle it or dye it either to keep up with the latest trends or simply because you fancy a change. Missing out on that can be difficult.
Alopecia Areata is an autoimmune condition that causes your own immune system to attack your hair follicles, causing hair to fall out.
Anyone can develop alopecia areata, including young children. It leads to circular patches of hair loss that can appear overnight. As time goes on, more patches may appear and some people lose their eyebrows, eyelashes, and nose hair too. About 5% of patients lose every hair on their body.
Since alopecia areata changes your appearance, it’s a highly visible condition. That can make it hard to live with, but you can still enjoy a varied, active, interesting life. Here are our tips.
1. Play to your strengths
A dermatologist at Johns Hopkins University advised one young girl’s parents not to focus on the condition. Instead, he recommended they focused on raising a strong, confident child by keeping her busy in different areas.
That’s good advice. Build a meaningful life based around you interests and strengths. Go to a drama class, volunteer for a local charity, travel to some fascinating places.
You have a great deal to contribute to the world. Don’t hide away.
2. Nourish your mental health
It’s widely recognised that people living with chronic disease are at greater risk of developing mental health conditions like depression. A 2022 study found that people with alopecia areata were 30-38% more likely to be diagnosed with new-onset depression or anxiety.
Alopecia areata may trigger feelings of:
- Loss and grief
- Isolation and loneliness
- Embarrassment
- Anger
- Desperate longing for a cure
- Fear that things will get worse.
Those are valid and understandable feelings in response to a difficult situation. Sometimes, though, the feelings seem to take on a life of their own and begin to negatively affect your quality of life. They may affect your mood, sleep, appetite, energy levels or concentration.
If you’re experiencing symptoms of anxiety or depression, it’s important to remember that these are treatable conditions and that help is available. See your GP first of all. They may prescribe medications or refer you to a psychologist to talk through your feelings.
3. Consider who to tell
Whether to reveal your condition is a very personal question and depends on many factors, including how comfortable you feel with the person.
We’ve seen a range of responses from people with alopecia areata. Some choose to tell:
- Nobody
- Only their closest friends and family – this usually means camouflaging hair loss with a clever hairstyle or wig
- A wider circle of friends, classmates and colleagues.
Trying to hide your condition can become a burden all by itself. You’re afraid people will find out, so you try to cover up your hair loss but there’s always the risk of it being revealed.
That’s why some patients choose to do a class presentation on their condition or give informative leaflets to new roomates, for example. International Alopecia Awareness Day happens on the 3rd of August 2024 – that could be a good springboard for a conversation about your condition.
As we said above, telling people is a very personal decision. It’s wise to talk it through with people you trust, such as your partner, family or psychologist.
4. Enlist professional help
We’ve already mentioned the importance of seeing a healthcare professional for mental health support. Such as a GP or psychologist.
You may also benefit from seeing a:
- Skilled dermatologist who can assess your condition and prescribe the latest medical treatments
- Talented hairdresser with experience in supporting people with your condition
- Capable wigmaker who can prepare a natural-looking wig (if you would like one).
5. Connect with others
Despite how it may feel, you’re not alone. There are many other people living with alopecia areata. Connecting with others living with alopecia areata may help you feel less isolated. It also gives you chance to learn from other people’s experiences.
The Australian Alopecia Areata Foundation runs private Facebook support groups where you can connect with people near you.
6. Enrol in a clinical trial
Clinical trials are a robust research method used to judge how reliable and effective a new medication is (and whether there are any serious side effects).
Joining a clinical trial may be an empowering experience for you, making you feel that you’re doing something positive to improve access to new treatments. You may benefit from:
- Early access to a new treatment
- Closer contact with researchers who understand your condition and can pass on their knowledge
- Regular monitoring
- Playing an active role in your own healthcare
- Feeling like you’re doing something important to improve care for others with your condition.
That said, there are always potential risks to participating in a clinical trial. You may:
- Be in the control group, meaning you’re given a placebo (a pill or injection with no active medication) or simply continue your current treatment
- Be given the new drug but find that it’s less effective than your current treatment or causes more side effects
- Experience an unexpected reaction to the new drug.
Sinclair Dermatologist is currently recruiting for two trials investigating new treatments for alopecia areata. We’re looking for:
- Adults with severe alopecia areata who will receive either a new injectable treatment or a placebo
- 12-65-year-olds with severe alopecia areata who will receive either a new oral medication or a placebo.
Both trials run for 160 weeks, during which time participants will visit our clinic in East Melbourne 16 times. There’s no cost for the care you receive – and, we’ll reimburse you for your time and travel.
Disclaimer
All information is general and is not intended to be a substitute for professional medical advice.
References
- Pfizer, Living with alopecia: a young woman’s path to self-acceptance, https://www.pfizer.com/news/articles/living_with_alopecia_a_young_woman_s_path_to_self_acceptance, [Accessed 18 July 2024]
- British Journal of Dermatology, The associated burden of mental health conditions in alopecia areata: a population-based study in UK primary care, https://onlinelibrary.wiley.com/doi/10.1111/bjd.21055, [Accessed 18 July 2024]
- National Alopecia Areata Foundation, Emotional wellness and mental health, https://www.naaf.org/emotional-wellness-and-mental-health/#, [Accessed 18 July 2024]
- Alopecia UK, When should I tell people I’m losing my hair? https://www.alopecia.org.uk/faqs/when-should-i-tell-people-i-am-losing-my-hair#, [Accessed 18 July 2024]
- Australian Clinical Trials, What you should know about taking part in a clinical trial, https://www.australianclinicaltrials.gov.au/participants/what-you-should-know, [Accessed 18 July 2024]