I was 21 when my hair fell out and I became a recluse now after treatment I want to tell others there is hope
When Londonderry woman Paula Kyle started to mysteriously lose her hair, a deep depression set in, to the point that she considered ending her own life. She tells Una Brankin how one firm’s innovative hair replacement treatment has helped her to deal with alopecia.
When Paula Kyle's older sister was receiving chemotherapy for terminal breast cancer, she told Paula that she finally understood the devastation caused by total hair loss.
"I remember my sister Claire saying: 'Oh my God, it's bad enough being diagnosed, but my hair falling out is worse; I don't know how you cope with your alopecia'," Paula recalls.
"Claire died when she was 40, in 2002. There aren't many who know what this is like, but she did, and my daddy did. He was an elderly man when he lost his hair with prostate cancer in his seventies, and even he took it bad."
A single mother-of-two from Londonderry, Paula (52) feels her life has been "ruined and mentally scarred" by severe alopecia, which struck her at 21. Since then, she has been unable to work due to depression, brought on by the alopecia and other health issues.
"I had a fair enough head of straight brown hair when I was younger," Paula recalls. "Then, I was washing my hair in my sister's house one day and she noticed a patch on my head. I went to see my doctor and he referred me to a skin specialist in Altnagelvin, who said it was alopecia. Within a month, all my hair had fallen out.
"It was the most terrible time, a nightmare. When I went back to see the specialist, he couldn't believe I was the same girl."
Paula was diagnosed with alopecia cicatricial, a rare type of alopecia that destroys the hair follicle on the scalp and body permanently. And, to add to Paula's distress and confusion, the skin specialist couldn't give her a definitive explanation for her hair loss. "There does not seem to be any trichologists available here and Altnagelvin does not know what causes it. Stress is supposed to be a factor, but I wasn't stressed then - I was a happy-go-lucky girl. Now they're thinking it's a problem with the immune system, but they don't really know for sure.
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"Six months later, I lost my eyebrows and all the hair on my body. The hospital gave me wigs, but they were so bad they highlighted the problem.
"So I wore a wee bandana and people thought I had cancer, and were afraid to ask.
"My whole life just stopped. I became very anxious and didn't want to go out the door. I just wanted to go and hide in the attic."
Paula became increasingly reclusive and found herself relying on her niece to do her shopping. Confined to her small flat in Derry city, she had no social life and became depressed.
"If I did venture out, I'd be shaking with nerves, even at church. It's unbelievable how it changes your life. The alopecia itself is like an earthquake, which brings all this stuff in its wake.
"People can be quite nasty; I remember a group of teenagers shouting at me one day. I was young and I knew that they had no sense, but it still hit me hard.
"I was afraid of going to Mass, in case somebody sat behind me with a child who would pull my wig off. If it was a blowy day out, I just couldn't even contemplate going out the front door. I always remember sitting in the car in William Street and wanting to go into a shop to buy some things for the house. I was looking at the people walking by, but I couldn't bring myself to get out because of the weather."
Unable to socialise throughout her 20s, the only way Paula could meet people was if they were brought to her flat. She admits that her vulnerability and loneliness led to relationships in which she was "taken advantage of", but she was delighted when she fell pregnant at 30, by her former husband. Her eldest daughter Roslyn, now 22, is studying at Liverpool University and her youngest, Rebecca (17), is still at school.
"I was so happy when I found out I was pregnant," Paula remembers. "It was my first pregnancy, and then Rebecca came along five years later. But as the kids grew up I found it very difficult to go to their school plays and meetings. They were affected by this nightmare, too. Not being able to go out, I focused on keeping the place nice and developed OCD, which was hard for the kids, too. I couldn't cope. All my self-esteem was gone with my hair and my relationship broke up."
Counselling didn't help Paula, who admits to having felt suicidal at one point, but she is forever grateful for the support of her family. She is the third youngest of the nine children of the late Jim Lamberton, a former Dupont factory worker, who gave up his job to care for Paula's late mother Bridie, who suffered from severe rheumatoid arthritis.
"My parents were devastated; I was their child and my life had been destroyed. They helped me every way possible. The counsellors couldn't understand why I couldn't go out the door and was put on anti-depressants but they didn't work, to be honest. I'm on new, stronger ones now. They have an in-built sedative which helps me sleep."
After three decades of emotional turmoil, the turning point for Paula came in 2012, when her brother, Eddie, showed her an advertisement for a hair replacement treatment geared towards those with severe and total hair loss. The hair integration process involves a mesh attached with surgical tape to the scalp. Real hair extensions are woven in using minute plastic clips.
"The only problem was that it cost the princely sum of £1,500, but my family all bunched together to pay for it," says Paula. "I went to Belfast for it - it takes ages. You start off sitting there like Cinderella and hours later you're turned into a princess. It was a miracle. My daughters and all the family were so delighted for me.
"The therapist cut and styled it. If I was 30 years younger, I'd have it down to my bum. But I kept it in a bob, because of my age. It's that good, there are people who don't know it's not my own hair. It was comfortable but I didn't wear it all the time - I took it off at home and washed and blow-dried it."
One year on, however, and Paula's new hair was showing signs of wear and tear. Reluctant to ask her family to pay for a replacement, she turned to the Health and Social Care Board.
"I was offered one of their awful wigs. They can give people gastric bands and breast reductions, but they can't do anything for alopecia sufferers. At that stage, three years ago, the depression got really bad and I was losing the will to live.
"What saved me was joining my friend Rosie Doherty's Galliagh Women's Group. They welcomed me with open arms and really helped me. They got me onto radio programmes and all of a sudden, I got a call from a lady from the health board saying 'I'm going to help you'.
"I thought I was dreaming. I thought it was a prank. I told her she'd never realise how happy she'd made me."
Paula was granted the funding and received her latest new 'head of hair' earlier this month, courtesy of Deborah Fox from the Dr Follicle Hair Emporium company.
"There is a major demand for hair replacement from people in Northern Ireland and beyond," says Ms Fox. "This is a problem which can take over people's lives and those who need support to have a treatment which can help them should be given it."
Now able to get out and about more often without feeling self-conscious, Paula is keen to spread awareness of alopecia and the plight of those afflicted by the condition, which affects men and women equally. The exact number of people with alopecia is not known. It can occur at any age but most cases first develop in teenagers and children.
"I'm very lucky to have got the funding but there is nothing on paper to guarantee it on a yearly basis and I just wonder, how many other Paulas are there sitting at home, suffering in silence?" she adds.
"My journey has been so, so dark, I hate to think of anyone going through the same without support. There should be a trichologist and an emotional care package in place for those who are diagnosed, something which was never offered to me.
"It's just not enough to tell a woman they need a wig and leave it at that."
- The Greyabbey-based Helping Alopecia Trust charity can be contacted at 07752 029 940 or email firstname.lastname@example.org. Dr Follicle Hair Emporium, Lisburn, tel: 028 9263 8130.
Living with hair loss
- TV presenter Gail Porter has suffered from depression on and off since being diagnosed with alopecia in 2005. While appearing on Celebrity Big Brother in 2014, she admitted the condition left her feeling "extremely ugly", and told her housemates of the name-calling she has endured from members of the public.
- Alopecia affects all ages and both sexes. It typically causes patches of baldness and in severe cases, such as Paula Kyle's, complete hair loss on the entire body. In many less severe cases the hair regrows, typically after several months.
- Scalp hair loss occurring in patches is referred to as alopecia areata.
- Alopecia totalis refers to complete scalp hair loss, and alopecia universalis, total body hair loss. Alopecia cicatricial is a rare type of alopecia that destroys the hair follicle permanently.
- There is no known cure for any form of alopecia, although there are various treatments available to help hair re-growth.
- Thought to be an auto-immune disease, alopecia makes white blood cells (lymphocytes) and antibodies which attack bacteria, viruses and other germs. The white blood cells encircle the hair follicles and attack them.
- It is not known why alopecia or other auto-immune diseases, such as allergies or eczema, occur but it is thought that something triggers the immune system to react against the body's own tissues. Possible triggers include viruses, infections, medicines or other environmental factors. There is also an inherited factor which is believed to make some people more prone to auto-immune diseases.