Alopecia areata: management and unmet needs

Full patient interview with transcript

Below is the full interview with Lynn Wilks, a retired NHS hospital biomedical scientist and marketing, advocacy and public policy professional who lives with alopecia areata. Lynn shares her personal experience of living with alopecia areata. She describes its impact on her life and her self-image, and discusses her lived experience of treatment and management. A transcript of the interview follows the video.

Lynn Wilks is a trustee at Alopecia UK and received payment for the interview. Lynn is not currently connected to the sponsor. 

Alopecia areata: A patient’s perspective on its emotional impact, management and treatment

Interview transcript

Meet Lynn Wilks

Hello, my name is Lynn. I'm 57 years old. I'm retired, and I live in Wales in the United Kingdom. I'm a trustee and volunteer with Alopecia UK as well as a patient with alopecia areata.

What were the first signs or symptoms of alopecia areata that you noticed? How were you affected by these?

What were the first signs and symptoms of alopecia areata, and how was I affected by them? Well, it's hair loss. I first had hair loss 23 years ago. Then, I lost all the front and my fringe and around the back, like an ophiasis pattern. I was lucky then because I was straight away referred to a dermatologist. He did a biopsy. He also worked out that I had an underactive thyroid and prescribed me thyroxine. Luckily for me, it was seen that it was more telogen effluvium than alopecia areata, and that way it meant it recovered within about 12 to 18 months. There was great relief on that. I've had occasional patches of hair loss over the 23 years, but generally I've been able to hide them. They've recovered. But then, it was 2020. Yes, just the start of Covid and, all of a sudden, I found hair on my pillow, hair when I was waking up, chunks of hair coming out when I was having a shower. I suppose I thought it was the same thing again. Maybe it would grow back. Maybe it was just my thyroid. And my GP, who was excellent, found out that my TSH was high. That's my thyroid-stimulating hormone, so he upped my thyroxine. That gave me false hope. I thought it would grow back again, but it didn't.

And in the time between March and June 2020, all my hair fell out. How did it affect me? I was devastated. I was angry. It was like, why me? Why now? Why is this happening? I also got obsessed with the triggers. Why had it started? Was it the fact that I'd moved house? Was it the fact that I had facial shingles at the beginning of the year? What had actually caused this? I just felt helpless, hopeless. And yes, then the anxiety, depression and everything that goes with this lifelong autoimmune condition hit me. Really like a sledgehammer.

What was the emotional impact on you of the diagnostic process?

What was the emotional impact of me on the diagnostic process? You've got to fight for a diagnostic process with alopecia areata. Obviously, in most countries across Europe or in the US, your first point of call is the primary care physician. And hey, it's luck if you've got a good one or a bad one. Many primary care physicians will just send you away to watch and wait to see if your hair loss recovers or gets worse. I was lucky. I had a really good female GP who was empathetic. She did a full range of blood tests, which I believe are required. Looking at the hormones, looking at thyroid, looking at vitamins, B12, that sort of thing. I'm not a doctor. But I think as a patient, that's what I wanted. I wanted them to really treat me seriously, that it was a disease. But part of me felt a bit embarrassed because what do you get? It's just hair, it's not gonna kill you. You feel like it's not a proper disease, but it is. I was then lucky, I got referred to a dermatologist. We know in the UK, only one in three or four patients get referred to a dermatologist, and the wait is often long. We totally understand the challenges of healthcare in the UK and across Europe. There's no money, there's no time, there's no doctors. But we know at Alopecia UK that some patients are having to wait 9 months to over a year to see a dermatologist. I had to wait 9 months for a phone call with a dermatologist, not even a Zoom or Teams call. How could he diagnose my alopecia areata without looking at my head? I was angry. Again, I felt abandoned.

So, what did I do? I paid to see a private office dermatologist. It still took me 6 months. It wasn't gonna be covered on any health insurance. And that person gave me 15 minutes – 15 minutes for £180. I had no hair by then. I was wearing a wig. And what did he say to me? "You've got a nice wig there, you'll be fine." No, I wasn't fine.

When I finally had that phone call with the NHS, the National Health Service state dermatologist in the UK, he actually gave me a steroid cream and told me to go and buy some minoxidil. They said if that didn't help, there was nothing else they could do, yet my friend who lives in another part of England, she was offered all the treatments that I Googled. So, she was offered steroid cream, she bought some minoxidil. She was then tried on cyclosporine. She was then tried on methotrexate. Okay, none of them worked for her and she had to fight for that treatment, but she got more options than I did. Again, that made me feel angry. And all this time, I was suffering from the consequences of having no hair. And by this time, being alopecia universalis: no body hair, no eyelashes and no eyebrows.

What recommended treatments for alopecia areata did you try, and how was your experience of these?

What treatments did I try for my alopecia areata? What treatments was I offered? Well, I'm one of those annoying patients that Googles everything, you know, that comes into your office with all the answers. And I know that there are no licensed treatments for alopecia areata, at this point in time. And those that are available, they don't work very often. They work in a small number of patients and actually you might not get that much hair loss. So, that didn't give me any hope. But I still wanted to be offered the treatments. I was offered a steroid cream and told to go and buy some minoxidil. The minoxidil just made all the final ends of my hairs fall out, which I knew would happen. But again, I didn't have any regrowth.

From the three dermatologists I saw, well, two of them didn't offer me anything. They said nothing would work now I was alopecia universalis. Yet, I had other friends and contacts that were using the immunosuppressants and methotrexate and were having some good results and seeing hair growth. Again, I think as patients we have to fight. We have to fight to try and persuade a dermatologist and I think it's great that this education will hopefully make sure everybody's up to date with what is available and can help patients with alopecia areata.

In terms of personal wellbeing, what aspect of alopecia areata affects you the most?

What affects me most? I've got no hair. When I first lost my hair in 2020, I did go through that grief curve. There was anger, there was denial, and with that, an awful lot of anxiety. I didn't want to tell people what was happening. I didn't want people to see me bald. I still don't want people to see me bald because I think they'll think I'm ugly.

Often you get asked questions about, "Oh, when's your chemotherapy finishing?" People think you've got cancer, and while I'm thankful I haven't got cancer, I've still got alopecia areata and no hair, and as I've lost my hair now two and a half years ago, it's highly unlikely – you'll know the statistics better than me – that it's ever gonna grow back. So, there's all that anxiety. Yes, I was depressed. I was really depressed. I cried a lot. I didn't want to go out. I didn't want to socialise. I was frightened being in the garden in case anybody on the road saw me bald, so I had to wear a hat or put a wig on. And wigs are not very comfortable, they're itchy and they're hot, and you think everybody knows you're wearing a wig. If that wasn't bad enough, at the end of 2020, I lost my eyebrows and my eyelashes. That really knocked my confidence. You feel that you've lost all definition. 

I cried nearly every day. I really didn't know what I wanted to do and how to get through it. I know now it's called the psychosocial impact of having alopecia areata. It stops you doing an awful lot of things. At Alopecia UK, we did a piece of survey work back in 2019. We questioned about 300 members of our social media group. Now they're quite a feisty bunch, but they suffer with the psychosocial impact of alopecia areata. Forty-six percent of those people suffered from anxiety and depression. About 25% of people felt that the alopecia affected their close relationships. I can understand that. I thought I was gonna lose my husband. Why would he want to be with a bald woman? Would he find me attractive anymore? And that's certainly what the survey said. And we know that alopecia areata often starts from, I think it's between 19 to about mid-twenties. Can you imagine the effect that has on a child at school, a student at university? I know a young woman who actually lost 2 years of her academic life because she stopped going ahead to do her exams before she went into university. She felt she couldn't go out at all. So, yeah, it's quite devastating.

What impact has alopecia areata had on your day-to-day life? Has it stopped you doing anything?

What effect has alopecia areata had on my day-to-day life? And does it stop me doing anything? Well, initially it stopped me going out. It stopped me socialising, stopped me wanting to be with friends. I was so conscious of what I looked like. And like the Alopecia UK research, it shows that 75% of women who have alopecia areata generally wear a wig. And if you wear a wig, you wear it most of the time. That was my lifeline. I needed to have my wig on. But, actually, that stops me doing things because what if it gets blown off when I'm doing a country walk? What if somebody knocks me and pulls it off when I'm in a pub? What happens when I'm in a swimming pool or a leisure centre and, again, it gets knocked or it comes off? I'm going to feel very vulnerable, very exposed that I'm a bald woman. And even the simplest thing of taking a jumper off when I get too warm or to try something on in a shop, my wig's likely to come off as I do that. So, I'm not gonna do those things. That's how it's affected me.

It stops them mixing socially. We've heard of teenagers and students where it stops them going to school or college and has therefore a detrimental effect on the rest of their life. Alopecia areata is a lifelong autoimmune condition which gives you a visible difference that you really don't want to have.

How has alopecia areata affected your social interactions?

How has alopecia areata affected my social interactions? Well, initially I avoided them. I didn't want to be out with anybody. I was so conscious that they'd know that I had a wig on. And at Alopecia UK, we hear how a lot of people don't go out, don't socialise, and maybe give up even on school or university. To give you an example, I was in a pub last week, and an older lady came up to me, quite jolly and rather loud, and said, "Oh dear, I didn't know you had alopecia areata. I didn't know you wore a wig. Well, that's a nice wig". I just wanted the floor to swallow me up. She didn't mean any harm, but it did cause me harm because I was then suddenly conscious that people were staring at me. I was conscious that more people in that pub then knew that I had alopecia, and I had no hair, and I was wearing a wig. I tried to put on a brave face, and I think that's an important thing to think about. I'm often putting on a brave face, which I did that day, but when I went home, I just cried and thought, I don't want to go there again. I don't want to go to that pub. More people now know I've got no hair and I'm wearing a wig.

I also want to mention about men.

While it can actually be really negative for some of Asian or ethnic heritage, where a beard is important from a religious perspective, we know that men are less likely to go to see a clinician, and obviously, they're not even offered a wig. Yet, we know that they suffer the same psychosocial impacts as the women do. So, please give your time to really understand the challenges that the men with alopecia areata are having.

Could you please talk about your self-image in relation to alopecia areata? How has your view of yourself changed throughout your journey with alopecia areata?

How has alopecia areata affected my self-image? It’s certainly not just cosmetic to me. It’s not just hair. And people talk about a journey, and I think that’s really important for clinicians to consider. In the early days, it was anger, it was denial. It was obsession with finding that trigger. It was anxiety and depression, and I cried an awful lot. I think I also spent more time looking down at the floor than I did looking at people. I spent more time looking really, really miserable and self-conscious, rather than smiling and interacting with people.

That lack of self-confidence, anxiety, depression, challenges in relationships, challenges going to work, challenges going to school or university. And yes, there are feelings of suicide. We know of one teenage girl in America who committed suicide, and we do hear people that do need that real extra psychosocial and mental health support going through the challenges of alopecia areata.

And there are a number across Europe that we know of, and in the US, as well as Alopecia UK in the UK. Joining the social media groups there with 15,000 other people with alopecia, it was great. It gave me that support and reassurance because I could talk to people and see people like me and braver people than me, and people who got it and would support me, be empathetic, and really understand the challenges I was having. So, for healthcare professionals, that’s such value, talking to, on a peer-to-peer basis, with other people with alopecia areata.

What are the three key things you would like doctors to do differently when discussing management for alopecia areata with patients?

What are the three things that I'd like dermatologists to do different, dealing with people with alopecia areata? Well, at Alopecia UK, we did some research with about 300 people with alopecia areata, and the dermatologists here will be glad to know that people were happier with their interactions with dermatologists than they were with their primary care physicians. So, that's a first good point.

Now, I know there are lots of very caring dermatologists out there and I also understand the challenges that you have with time in a clinic, but that time makes so much difference. It is around understanding the condition, understanding this lifelong autoimmune condition that's gonna affect the person, and also dealing with the psychosocial impacts of that. I was talking to a dermatologist the other day who said she has a handful of patients who want to see her once a year, and she, yes it's a challenge, but happily gives them that time, because that time to talk, that time to rant, that time to get some, if you like, psychological support that makes all the difference. And the other thing in terms of being caring is that acknowledgement that this is not just a cosmetic condition, it is an autoimmune condition. And in fact, many of your patients, as you'll know, have other ATPs as well as alopecia areata.

Or the one I hate the most is “go and get yourself a nice wig dear”. People want to hear good, up-to-date, detailed information about all the treatments that are available. You are the doctors and only you will understand why one treatment may be not appropriate or effective for a patient. Please explain that to them. So, why you're not gonna give injectable steroids to somebody with AU.

In the Alopecia UK research, we heard from people that didn't feel that some of the clinicians were up to date and really understood. I'm sure you do understand about all the treatments and, as a clinician, you don't want to fail. Yet many of the treatments for alopecia are off licence and we know that they've got very limited effectiveness.

The third thing that's important to many people with alopecia is for their dermatologist to facilitate access to tests, access to treatments, access to psychosocial support. So, we understand that certainly in the UK and the NHS, there's lots of challenges at the moment, whether that be staff shortages or time to an appointment. And we know that there's a multidisciplinary team involved in the management of alopecia areata, from the primary care physicians and GPs to dermatologists and then maybe mental health teams. But, please do what you can to facilitate the access. I certainly get really, really angry when I know that I'm not being offered anything and not even being offered an annual follow-up, yet somebody else is getting access to the immunosuppressants, like methotrexate or even some of the new treatments that are coming online. And then there's a psychosocial impact. Please help support your patients. Yes, sometimes you might feel like that psychologist and it's fantastic if you can take that time to give the person that support. If you can't, please do facilitate access to mental health support services back to the GP or to peer-to-peer patient support groups, like Alopecia UK.

Talking to me as an individual, what did I want from that dermatologist? I did want better access to the treatments, more information and more choice. I certainly wanted more than a locum dermatologist over the phone. I certainly wanted more than 15 minutes of a private dermatologist's time for £180. I wanted more of that understanding. And then there's the wig system.

As we understand at Alopecia UK, about 75% of women want to wear a wig. I certainly won't go out without a wig. I wouldn't go to the shops and to the pub looking like this. And that's a shame, isn't it? Because I wish that baldness could be normalised and that I would be confident. But in terms of access to wigs, they are so important. With me, my GP didn't even know the system for giving me access to a wig from the National Health Service. I had to find that out. I made the phone calls to the orthotics department to find out how I could actually get a voucher for a wig in this country.

Please facilitate the access to wigs for the women and for the children, and younger people who have alopecia areata. But also be conscious, is there access to microblading of eyebrows for men?

What unmet needs of alopecia areata management matter most to you?

What aspects of unmet medical need for the management of alopecia areata are important to me? I want a treatment that works. I want fair access to treatment. And I want there to be access to psychosocial support.

What do I mean about those three things? I don't think there's gonna be a cure for alopecia areata in my lifetime. What I do hope for is an effective treatment that's licensed for alopecia areata so healthcare professionals, like yourselves, are confident to prescribe them and use them, knowing that they're effective in letting the person have their hair grow back to a considerable amount, and that they're safe in terms of limited side effects. We know that, as it's a lifelong autoimmune condition, it means taking a treatment for a long time, but I think we'll accept that for an effective and safe treatment that's licensed for alopecia areata.

The second thing is about fair provision for treatments. And I haven't mentioned this, there's a lot of discussion about percentage of hair loss, and, hey, I haven't got any, but what's really important just as much is the psychosocial impact: the anxiety, the depression, the effect on a ‘normal’ life. So, please consider that.

At Alopecia UK, we see that, in many occasions, people with patchy hair loss are just as distressed. We know that maybe the new treatments are just going to be for severe alopecia areata. We do hope there's fair access to the treatments so that you don't have to be referred to as tertiary centre in order to be prescribed those treatments, but that they will be readily available from most hospital dermatology departments and office dermatologists across Europe.

The last thing does talk to that psychosocial impact and help. We know that dermatologists are about that diagnosis and treatment and only have a finite time. We would love to see better access to psychologists, to counselling, to peer-to-peer groups, online support, and other, if you like, psychological support services to enable people with alopecia to come to that position of acceptance.

Learn more about alopecia areata: the unmet medical needs, management strategies and treatment planning, including the emerging role of JAK inhibitors