It recently dawned on me that this month will mark seven full years of the Leeds Alopecia Support Group. I held the first meeting in November 2012 and the time has gone in a flash! Next year will mark a decade of me losing my hair; an anniversary of sorts. I can’t believe that it will have been 10 years, perhaps because the memories of me losing my hair, and in particular my first headshave, in July 2010, are so vivid.

I initially reached out to others with alopecia via Twitter, under my witty moniker @hairlesswhisper (well I thought it was witty, ha!).  This was around Sept/Oct 2012 and I had already had my first experience of meeting others with alopecia, after travelling down to London in May 2012, for an event advertised by Alopecia UK.

It was such a transformational moment for me in my journey with alopecia (and not only because it was my first meeting with Jen Chambers who later got me involved with the charity). From meeting others, I instantly I felt a huge sense of relief. It’s the only way I can really describe it. As great as family and friends had been up to that point in terms of supporting me, I still felt quite isolated and, to be honest, a bit of a freak. Even though I’d spoken to others online for a couple of months before that face to face meeting, seeing people ‘just like me’ in the flesh was exactly what I needed. Being able to share experiences, laughs…I even remember breaking out into an impromptu scarf tying tutorial; there is so much you can gain from being in an actual room with others compared to a virtual online space.

After a couple of years of constantly scanning the streets of Leeds on my lunch hours for others ‘like me’, I decided to see if I could find anyone around in my local area online. Via Twitter I found a lady called Becky who had had alopecia for years and never met anyone else with the condition. We agreed to meet in a pub in Bradford and as I walked in Becky greeted me with such enthusiasm and excitement. Her reaction made me feel like a bit of a celebrity; it was weird! But I could instantly see the impact that meeting someone else with alopecia has. We talked and talked and she was able to share things with me that only really make sense to someone else who has shared the same experience. Of that first meeting, Becky says:

I thought it was just me with alopecia and I just didn’t think there was anyone else the same age. I was depressed and feeling jealous of other women and their hair. Family were supportive but they didn’t really understand how I was feeling. Then my sister found Amy on Twitter and suggested I got in touch. I am so glad I did. It was amazing to speak to someone in the same boat. I encouraged Amy to set up a group so we could reach out to others too.

Becky was one of the first members of the Leeds Support Group. I chose Leeds city centre as the venue for meetings as I was working in Leeds at the time and was able to easily hold meetings after work. But most importantly, I wanted somewhere with good transport links. As a result, over the years I’ve had people travel into Leeds by train, bus and car from all over the Yorkshire region. It’s incredible to think that 40 meetings have been held in Leeds since 2013. During that time we’ve welcomed guest speakers, held demonstrations and enjoyed cake! 

In 2013, I attended my first Birmingham Kids group meeting and am currently the leader for this group too. I hosted the first Yorkshire Kids meeting in 2016 and I love meeting new families. I have been fortunate to meet many fantastic children with alopecia over the past few years; it’s one of my favourite things about my job. After a recent Birmingham Kids meeting, one parent recently told us:

My son loves coming to the groups. It’s helping us both get used to alopecia being part of our lives. It’s lovely to be part of such a friendly and accepting community.

Warm fuzzy feelings all round!

During my time working for the charity, I’ve really enjoyed travelling to different support groups across the UK. I’m always delighted to see new support groups setting up. It’s fantastic to think that Alopecia UK now has support groups from as far south as Inverness (brand new group!) to as far south as Jersey. I’m pleased to see new groups starting and cannot wait to see what 2020 has in store for Alopecia UK’s support group network. Personally, I am looking forward to hosting six Leeds support group meetings, including some Saturday meetings which is a new thing I’m trying in 2020. Plus two Birmingham Kids meetings and two Yorkshire Kids meetings. 

If you haven’t been along to an Alopecia UK group, consider getting along to one in 2020. Even if you don’t think you’re in need of support yourself, don’t underestimate what you can give to others by sharing your own experiences.

Click here to find out more about what to expect from an Alopecia UK group

Or perhaps there isn’t an Alopecia UK group in your area and you’d like to get one up and running?

Click here to find out more about what is involved in starting an Alopecia UK group