My name is Samantha. I am 39 years old and live in Glasgow. I
currently have alopecia universalis and was first diagnosed with alopecia
areata when I was 12 years old.
The hair loss was first noticed by someone behind me on the
school bus who helpfully shouted to everyone that I had a bald spot at the back
of my head. I asked my best friend beside me if this was true and her reply was
“Yes, but it’s only small”.
Initially I was confused but not really worried. I hadn’t
heard of alopecia before so I just assumed it was a small patch that would soon
My GP explained that it was probably happening as a delayed
reaction to getting knocked down by a car the year before. I was referred to a
That’s when the treatments started. I tried a topical steroid
which wasn’t successful so I was then given steroid injections. But these left
dents in my scalp so we didn’t repeat these. I was offered ultraviolet light
treatment but when we were told there was a risk of cancer, it was at that
point that my mum and I decided we would just leave treatment out and let
alopecia run its course. The dermatologist agreed that there was not a lot else
that could be done.
In the first couple of years, I developed large bald patches
at my crown and side of head. Over the years, it tended to fall out in Winter
and then grow back in the Summer. In the initial couple of years the hair loss
was very severe but it was only mild in the years after. However, three years
ago the patches got larger again and I now have alopecia universalis.
I think the biggest struggle was having alopecia at the age
of 13/14, when I was just beginning to notice boys and vice versa. It was a
painful feeling, to look different from my peers. I think that was the hardest
part of my journey. Another struggle was living with the fear of the unknown –
Would it get worse? Would it ever stop? As it turns out, living with the fear
of losing all my hair was worse than the reality of it actually happening.
I have now learned to love and accept myself. I can show my
teenage son how to live with strength and be an example to him and tell him not
to worry so much about what other people think. Today I stand tall and am proud
to be different. Getting to this point hasn’t been an overnight thing. I would
advise people to give themselves time and allow yourself to feel sad but try to
look for ways to be positive about it.
I haven’t been to an Alopecia UK support group or event yet
but I am really looking forward to attending the ‘Big Weekend’ in September as
it just happens to be in my home city! I hope to meet lots of others there too.