My Story

1st October 2011 I was sitting in my garden surrounded by family – it was my eldest sons 30th birthday and the weather was unusually hot. I remember thinking as I watched my grandchildren playing; that this was life was all about. Rarely do you actually sit thinking “I feel really happy and content with my life”, but this was one of those moments. Little did I know that in the weeks and months ahead I was to face one of the biggest challenges of my life? Literally days after that lovely birthday party I noticed as I washed my hair, that some hair had come out and was tangled around my lingers. I didn’t think this was particularly unusual at first, but then I noticed that I was having to clean my brush daily, and soon I started to collect my hair as everyone was saying “it’s normal shedding” and that I was imagining it.

After a couple of weeks I realised that I was not imagining it and I went to my local GP. He sent me off for a blood test, as he thought maybe I was anaemic? A week later the results came back – no I was perfectly normal. “Maybe it was stress” the Dr suggested? Well my job has never been the easiest, but I loved it and everything else in my life was great. Perhaps it was the car accident I had, had a few months earlier and it was delayed stress. Bottom line – no one knew!! A further week passed and I decided I needed to go to see a private GP at Springfield. She instantly diagnosed me with Alopecia. I was distraught as the only other person I knew of with Alopecia was Gail Porter and she was “BALD”, my life would be over if that ever happened to me!! She urgently referred me to a private specialist in London – a Professor. He did a huge amount of blood tests – all of the results returning as “normal” and then assured me that if I took these massive doses of steroids, anti-rejection drugs and rubbed this sticky lotion into my thinning hair, the remainder of my hair would not fall out. Oh, and by the way every visit to the Professor cost me £250. Every morning when I woke up I had hair all over my pillow in my eyes and in my mouth.

I stopped washing it as it was so distressing. I decided to go to my hairdresser and ask her to cut it short and that was another experience I will not forget in a hurry. I explained what the problem was and she promised that it would be done privately, but when I arrived she explained that the private room was being used for a manicure and that she would have to do it in the salon in front of everyone. I felt like a freak and although I am sure this did not happen, I felt people look away with embarrassment as I now had bald patches all over my head. By now it was half term and I was due to go abroad for a few days. My hair was continuing to fall out, and a wonderful friend offered to go and look at wigs with me “just incase”. Going to buy a wig for the first time was also something I will never forget. The first shop we went into decided to make a mould of my head by using cling film and sellotape. The experience was both humiliating and distressing as this older woman was moulding my head with my hair falling out all over me. I was forced to look at myself in the mirror as she did this, and it was an image I didn’t recognise as huge tear plopped down my face. My friend was so upset she had to step outside for a while. Luckily, I found a second wig shop and the guy there was amazing, caring, and considerate and allowed you to be very private. He spent 2 hours with me until I felt comfortable with a wig that looked similar to my usual hair style.

Once abroad I didn’t go out at all and just stayed in the apartment as the rest of my hair fell out. I was terrified of going through security at the airport wearing a wig as I thought they may ask me to remove it ………….. I really didn’t know what happens, of course they didn’t.

By December I now was off work and had lost all of my head hair and by Christmas I had lost my eyelashes, eyebrows, arm and leg hair and even my nasal hair. My finger nails were starting to flake and break and my skin was covered in itchy sores. My immune system was very weak and breaking down due to the medication I was on and I was catching everything that was going around, but it was taking me ages to recover. I looked at myself in the mirror and didn’t recognise the ET like creature staring back at me. Gone were the defining features that made me who I was – my hair, eyelashes and eyebrows. My wigs were itchy and I got rashes on my head where they rubbed. My grandchildren were great, but when playing with them the wig moved around on my head and I was scared it would fall off and scare them. I tried a range of treatments ranging from acupuncture where I lay with needles in my head for hours on end together with disgusting Chinese medicines and teas.

I went to the expensive hair loss clinic where they sold me a laser comb, vitamins, and shampoos? I sat under infra-red lamps and tried weird and wonderful diets but of course none of it worked. I decided my life as I knew it was over, I could not and would not live like this. If I could not have my hair back then I really didn’t see the point of going on. This was probably the lowest point in my life. Yes Alopecia is not life threatening, but emotionally it can destroy your life. I went back to the Dr’s in a terrible state and she put me on a huge dose of anti-depressants and for 3 days I lived in a kind of haze and I felt completely detached from everything and everyone. I spent my days researching Alopecia and started to realise that nobody really knows why it happens and that there is no known cure for it. I read distressing stories of teenagers who have to suffer hair loss, not just to girls but to boys as well. Their carefree and fun loving days were replaced by self-doubt and loss of confidence. Sometimes it happened at University and many dropped out and did not achieve what they were so capable of.

This really saddened me because my life has been pretty much dedicated to enabling young people to go forward in their lives and reach their full potential. I decided that this horrible disease had happened to me for a reason, and the reason was that I was not the sort of person to lie down and become a victim. started to rebuild myself starting with having my eyebrows and eyeliner tattooed onto my face. I threw away all the pills and potions and decided that I would accept my condition and I would dedicate my time to finding a cure, maybe not for myself but for future generations. I met a wonderful woman who has Alopecia Universalis like me, and together we set up a charity to raise funds to do our own research projects into this disease. Now I also have the opportunity to make sure anyone who wants to buy a Freedom wig not endure the stresses that I did before I found this fabulous company.