Human beings never fail to astonish me! I recently met a lady who had come to an alopecia support meeting back in October 2013. She was visibly shaking with nerves and had been pacing the pavement outside for half an hour, scared to come into a room full of people who were the same as her. But she did come in and she did talk to us about her experience of alopecia and how, up until that point had never spoken to anyone about her alopecia. We chatted and talked about wigs; confidence and the Alopecia UK FlashMob which she had found both enlightening and inspiring. If it hadn't been for the FlashMob she would not have come to the meeting :)
4 months later, this same lady came to the February support group a "new person". She carried herself with a confident smile and was wearing a new wig. For the first time in her 16 years of suffering with alopecia (I use the word suffer here, because I feel this lady had suffered for years and had hidden away from her hairloss) is now being open with all the people in her life and talking about it. It really was an amazing revelation to see.
I left that meeting with a warm glow in my heart, knowing that talking about what hurts us, does help. That a problem shared, really is a problem halved.
I hope this snippet in the life of a lady who had hidden from her alopecia for many years, might help encourage others to talk about it too. I remember how difficult it is was when I was honest with my friends and colleagues. It was really tough, but I do believe that everything really does happen for a reason and that just because we may have no hair, it doesn't change who we are. In fact I think it can, in the long run, bring out our inner strength. Sometimes, it is not until we are faced with adversity that we really become who we were meant to be.
Sometimes I look back at my life 12 years ago; before alopecia. If I am honest with myself I do at times miss having hair, especially my eyelashes and eyebrows; which are what shape our facial features. Then I meet someone else with alopecia, and it confirms, that it's OK not to have hair. It is not what defines us after all. What defines us is our own personality, our strength and attitude to carry on and accept. I have met some extraordinary people through Alopecia UK that have inspired me to help make a difference to others.
The most difficult part of the alopecia journey is not knowing what you are facing. The uncertainty and frustration of trying to find an answer or the hope that this next pot of pills will help my hair grow back. I remember when I was in Thailand travelling 8 years ago, a lady told me to hit my head with a stick 100 times a day and that this would make my hair grow back!
I found that during my diagnosis I was not offered any information, let alone any treatment. Alopecia might not be life-threatening, but it is without a shadow of a doubt life-changing and often terrifying to deal with.
This brings me to some exciting news. I am very pleased to announce that Alopecia UK and the Welsh Institute of Dermatology are collaborating to develop an Option Grid for people who have been diagnosed with alopecia. Myself and a team of dermatologists, researchers and psychologists are working to develop a one-page table of frequently asked questions, helping patients to discuss treatment options following a clinical diagnosis, enabling patients to make informed decisions based on personal values and preferences.
There are currently 26 Option Grids and we now have agreement from the Option Grid Collaborative to develop an "Alopecia Areata Option Grid".
The Option Grid will provide patients with information about what treatments are available when you have been diagnosed with alopecia areata. People with alopecia areata may be offered treatments including steroid injections/creams or immunotherapy. Thie Option Grid will outline treatment choices for doctors to discuss with their patients during a consultation to help patients understand what treatments are available, their side effects and the likelihood of success. This will include psychological support as a course of treatment, as we understand the effects that this often life-changing condition can have on patients.
Keep an eye on the Alopecia UK website for more info on the Option Grid development.