More help is needed for Alopecia sufferers says Derry's Paula
These are the words Paula Kyle utters to herself every time she walks out the front door of her Racecourse Road home.
“I’ve become the greatest actor,” smiles the 52-years-old. No one, meeting Paula for the first time, would ever guess about the emotional and physical turmoil she’s come through, caused by a condition which, she says, needs to be talked about more.
During a four week period when she was 21, Paula lost all her hair.
“My life was completely changed in just a few weeks,” says the 52-years-old.
“It all began when my sister noticed a patch on my head after I had washed my hair. I went to my GP who said immediately that it was Alopecia and I was then referred to a specialist at the hospital.
“Within six months, I’d lost all of my body hair and at that point I was sent back to the specialist.”
It was the late 1980’s when Paula’s diagnosis was made, and her initial encounters with specialisits left her feeling more anxious about her condition.
“I just remember being told that the Appliance Officer would come and see me. I was offered wigs. The only thing I can say about them was that they were ridiculous looking. I was young and self conscious and became terrified of leaving the house. That fear got a grip of me and I can honestly say that, looking back, I became a recluse. I couldn’t face going out. People can be quite nasty and I remember a group of teenagers shouting at me when I was walking through Ballymagroarty one day. I was young and I knew that the teenagers shouting had no sense but it still hit me hard.
“Pretty soon, I just stopped leaving the house. 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.”
Paula says her mental health has been severely impacted by her Alopecia. She says she believes there should be an emotional care package in place for those who are diagnosed, something which was never offered to her.
“It’s just not enough to tell someone they need a wig and leave it at that.”
Paula says her condition has not only impacted on her, but also on the lives of her two children.
“I was too paranoid to go to school shows and meetings. I worried that my children might face questions at school, too. For years and years my life was totally limited.”
Everything changed for Paula when her brother pointed her in the direction of an advertisement he had noticed in the newspaper for a process targeted at people with Alopecia.
“It was a treatment that was available in London and Manchester but then it became available in Belfast. The cost of the treament was £1,500 and my family all went together to get me the money for it.”
The hair integration process is where existing hair is pulled through a mesh attached with surgical tape to the scalp. Natural hair extensions are woven in using minute plastic clips.
Paula says the innovative hair replacement system has given her a new lease of life.
“For me, this has been the difference between having a life and never leaving the house.”
Paula wants to continue to avail of the system and has asked, through her GP, for funding from the Health and Social Care Board.
To date, she’s been denied that funding and has now decided to speak out about the debilitating condition in the hope of changing attitudes.
“I have been offered a wig, but it’s not the same thing. I’ve tried wigs and they don’t work for me. The cost of this treatment is similar to providing two wigs, which is what most people would get. My GP has agreed that this is the best way forward for me but I’ve been refused. I don’t understand it.
“The reason I’m speaking publicly is because I know there are other young girls who are about to go through the same thing I went through. I really think more needs to be done to help and support them.”
For Paula, reaching out to an old friend last year, has helped her immeasurably.
“I decided to contact Rosie at the Galliagh Women’s Group, and I have to say it was the best thing I could have done. If it wasn’t for the Women’s Group I don’t know if I’d be here today. My self confidence was just so low.
“Reaching out to them was a lifeline and I feel now that I have somewhere I can come where I won’t be judged. There were times when it felt like life wasn’t worth living but to see the girls down here really lifts me. I’m determined now, though, to make sure that no other woman has to go through the years of turmoil I’ve gone through. Every individual deserves to be given the care which they need to help them live their life to the full. I don’t think I was given that.”
A spokesperson for the Health and Social Care Board was unable to provide details of why funding was not available for the treatment.
The spokesperson said: “The Health and Social Care Board has in place arrangements for managing the care of people with alopecia and similar conditions which includes the provision of wigs. Each individual will have different physical and emotional requirements and these are considered on a individual basis by his/her local Health and Social Care Trust. The HSCB therefore cannot comment specifically on the provision of care for any one individual.”