Living With Alopecia
Debbie Albrecht, Dorothy McLennan and Marie Childs
Alopecia is a topic that is discussed on and off in the Essence office because about five or six years ago, I was unfortunately diagnosed with Frontal Fibrosing Alopecia (FFA) a form of scarring alopecia which is characterised by a slowly progressive band of hair loss along the front and sides of the scalp resulting in a permanent loss around the hairline.
words: Michelle McCullough images: essence magazine
Before my diagnosis alopecia wasn’t really something I thought about - when I started noticing my eyebrows thinning, I just put it down to getting older. A few months later I realised the hair on my arms and legs had all but disappeared and I had a slight redness around my forehead. It didn’t cross my mind that it might be alopecia.
However, these noticeable changes were enough to make me seek an appointment with my GP who referred me to a dermatologist.
I remember my first appointment with the dermatologist who likened FFA to a forest fire - he assured me that it would burn out at some stage – hopefully sooner rather than later I thought and I’m quietly confident that’s what is going to happen. I have my fingers and toes severely crossed!
In the early days of my diagnosis, I was constantly on Google reading any research there was – but to be honest there wasn’t a lot. FFA was only diagnosed in 1994 and there seems to be no known cause or effective treatment but it is said to be increasing worldwide. I was prescribed daily antibiotics and steroids in the hope they would have some effect in halting the progression but in the end, I decided that the negative side-effects of the drugs and the fact that they were really only experimental at best made me decide that the uncertainty wasn’t worth the risk. I’m happy to wait until more research is done although I do have days when I wonder if I’ve made the right choice.
I’m fortunate that I have my close friend Michele, owner of Hi Gorgeous who is able to use her amazing styling skills to disguise my hair loss. Most people don’t know unless I tell them. Having a regular relationship with your hairdresser can be more important that you realise – they are often the first to recognise if things are going haywire. Michele has been quite surprised at the level of hair loss she is seeing in clients right now so something odd is going on. A worldwide group that I belong to, are convinced that it could be something in the ingredients of beauty products, skin care or it may be environmental – but who would know - it would be amazing to find out. Other forms of alopecia have been around forever so it’s interesting that this is a relatively ‘new’ variant.
For most of us, hair is an important part of our appearance and self-image, and any type of hair loss can be very hard to cope with – for some of us it is helpful talking with others who are going through the same thing. It was great to grab a coffee with business woman Debbie Albrecht and Rangiora High School Sports coordinator Marie Childs who were happy to share their experiences with me.
-Dorothy.
For Debbie Albrecht, a problem shared is a problem halved.
The well-known Rangiora businesswoman has alopecia areata, an idiopathic disorder characterised by a rapid loss of hair that usually begins on the scalp.
“I started noticing hair loss when I was about 40. I had what is called a subtotal hysterectomy, and I am not sure if it’s related but after that I started noticing less hair on my eyebrows, arms, and legs. Then about four years ago I started to get very noticeable patches of hair loss. At first I tried to disguise it, but it came to a point where I couldn’t do that anymore.
When she received her diagnosis, the 56-year-old said she took it “very personally’.
“There was a period of feeling sorry for myself, but I am not one of those people who will sit on that. I think when you are diagnosed with anything it’s like goodness gracious what is this all about? And after that initial shock you say okay what do I need to do? How do I sort this out? And then you get on with it.”
“I started wearing a topper which is a partial wig. Then I found out I could have a hair integration system, where they take what hair you have and attach real hair to it. I managed to do that for about six months, but I reacted to the net that they put on your scalp. So about three months ago I had my head shaved completely, and I started wearing a wig. But what has happened now is, and I don’t know how long it will last, my hair has started growing back.”
After her initial shock, the So You! Boutique owner made the choice to be open about her condition, and has used her experience to help herself and others.
“When I started this journey I did a Facebook video on the So You! page showing my hair loss. And after doing that, for months I had women come into the store and share their story about cancer or alopecia with me.”
“We have a lot of conversations with women about what is going on in their lives. My hair loss is nothing compared to what some of these women are going through. For me, the way I have coped with it was to share and it has helped me immensely.
Everyone has their own journey; everyone is different, and everyone copes in different ways. And if you aren’t coping that’s okay but don’t be too hard on yourself, it is going to take time. I think it’s important to be kind to yourself, have a supportive network and to talk to other people who have alopecia.”
The 56-year-old said a lot of the women who approached her were unaware of their options in regard to wigs and cosmetic treatments.
“A lot of them thanked me for sharing my story because they didn’t know what their options were. My eyebrows are cosmetic tattoos, I wear eyelash extensions sometimes so there are things out there that you can do – there is choice. You can still be feminine with no hair!
There are also advantages to hair loss. You don’t have to shave your legs or under your arms.”
“A number of people also did not know that they could receive financial assistance from the government to purchase a wig or hairpiece”, Debbie said.
Called the Wigs and Hairpieces Service Payment, this subsidy is for people who suffer from serious hair loss because of a medical condition, or have undergone treatment for cancer.
“The wigs these days look very real, especially the ones made with real hair. [For my wig] I went to Savanna Hair Solutions in Christchurch. It takes about six to 12 weeks to be made, and when you get the wig you can style it any way you want. You can colour it. You can use heated tongs on it. You can do everything and anything you would do on your own hair. The only thing you can’t do is go swimming with it on, and you wouldn’t go to sleep with it on.”
In addition to her alopecia, the 56-year-old has recently been diagnosed with haemochromatosis, a genetic condition that affects 1 in 200 New Zealanders. Also known as iron overload, haemochromatosis occurs when the body takes in and stores too much iron. This leads to a weakened immune system, and a toxic build-up of iron in your liver, heart, and pancreas which can result in permanent damage. “They do not know what causes my alopecia, but the indication is that it is related to haemochromatosis,” Debbie said. As for the future, Debbie hoped that by sharing her story she would be able to help more women who were going through a difficult time.
-Debbie
‘You don’t need hair to paddle’. That was the reaction of Marie Childs’ Waimak Dragon Boat Club teammates when she told them she was losing her hair.
To some that might seem like a strange thing to say, but it was exactly what she needed to hear. You see Marie has alopecia universalis, an autoimmune condition where the lymphocytes around hair follicles release chemical messengers called cytokines that reject the hair, resulting in 100% hair loss on the scalp and body.
The Rangiora High School Sports Coordinator’s alopecia journey started in 2010, and began with small patches of hair loss the size of a 20-cent piece that would appear periodically.
“I just felt a cool breeze one day and I put my hand up and thought oh my goodness - that’s skin. I didn’t think too much of it, and it grew back. Over the next three years I would get another one and it would grow back, then I would get another one and it would grow back. Then I noticed receding around my ears, and a patch on the back of my neck that just kept going up and up.”
Initially diagnosed with alopecia areata, at the end of 2017 the mother of two was told that her condition had advanced to alopecia universalis. This news coincided with a number of stressful life events for Marie, including the death of her beloved father, and managing the New Zealand Open Dragon Boat Team’s trip to the World Nations Championships in China.
“When I got back from China I went to the specialist, and he said it’s probably all going to fall out and not grow back. And that was it. No suggestions that I should go see a counsellor, nothing – just that it’s all going to fall out. And by Christmas it was all gone.
“I was devastated by it. There is a big difference in telling people you have no hair, and them actually seeing a totally bald scalp, no eyebrows, no eyelashes. There were moments where I thought I had to quit my job. I can’t do dragon boating any more. I just wanted to go and hide.’’
A turning point for Marie came when she made the decision to be open about her condition with her teammates.
“There was one of the girls on the team who said to me ‘I don’t care about your hair as long as you can still paddle’. And they [the rest of the team] were pretty much the same - ‘you don’t need hair to paddle’. They were interested, and they asked questions, but they didn’t judge me. It felt good just to paddle and know that my hair wasn’t their priority.
“That was kind of my turning point. I thought I can’t be a recluse, it’s not in my nature. So, I put a post on Facebook and did this major coming out.
While her teammates are not concerned by her lack of hair, the reaction of strangers can be quite confronting, Marie said.
“I get a lot of sympathetic smiles, and I have people come up to me in the mall because they think I have cancer. There was one guy very early on and he came up and he said, ‘my daughter’s got the same hairdo as you at the moment’. And I just turned around and said ‘I’m not having chemo’. He was very apologetic, and I felt bad, but I was embarrassed. He was just trying to be kind to me. I feel guilty that people feel sorry for me when I’m not actually sick.”
Now at the age of 54, Marie has started to make peace with her condition with the help of her family, and counselling.
“Everyone has been very accepting and supportive. My brother and his family have been very supportive, and my mum is amazing. At the start she struggled because she couldn’t do anything to help, and as a parent that’s really hard. My son’s Nathan and Matt have been a tower of strength since the very early days, and my partner Rick continues to be my rock.
“Late last year I had a couple of counselling sessions. It’s the first time I have had counselling, and spoken about my hair. She said I need to go through a grieving process. Losing my hair and dad dying, I kind of blocked everything out and just got on with it because that’s my personality, but it all caught up.
“There is certainly a degree of lost identity. Hair can influence how you see yourself, and how others see you, so it becomes an extension of your identity. I used to have long blonde hair, and there are still moments when I really miss it, that’s hard.
“There are so many people out there with different conditions. I still have two arms, two legs, my brain, I can still do everything I did before I just look different. When it comes to choosing your condition, I am pretty lucky really.”
When asked if she had any advice for others experiencing hair loss, Marie said was important to be open with the people around you.
“My best advice would be don’t try and hide it. Share it. Be open with it right from the start with people. I couldn’t think of anything worse than to be imprisoned by it. The more people you who know the more strength you will have. If you don’t tell anyone, how can they support you?”
“It’s life-changing and it’s hard. There are times when you’ll feel angry and naturally think why me? But if you want to live your life you’ve just got to get on with it.”
And that’s exactly what Marie is doing. When she is not paddling up and down the Kaiapoi River with the Waimak Dragons, Marie coaches the Rangiora High School dragon boat team. From 2019 to 2021, Marie was the president of the Aoraki Dragon Boat Association, and in 2019 she founded the all-women team Pegasus Dragons. In 2021, the Aoraki Dragon Boat Association awarded Marie the prestigious Coach of the Year award.