This month Alopecia UKís very own
Communications & Fundraising Manager, Amy, tells us about the support group
she runs in Leeds, West Yorkshire.
How long has the Leeds
support group being going?
We held our first meeting in February 2013
with just a handful of us meeting in an upstairs room of a local pub.
How often do you meet?
We meet 5 times a year Ė February, April,
June, August and October.
Why did you decide to
become a support group leader?
When I lost all my hair at the age of 27, I
felt extremely isolated. I met some others with alopecia for the first time at
an Alopecia UK event in May 2012 and I was amazed at how comforted I felt to
meet other people with alopecia and share our experiences. As great as my family
and friends had been throughout my hair loss, meeting other people who just Ďgot
ití was incredibly valuable. I wanted to give others the chance to experience
this and was keen to help others in my local area so decided to start a support
Do you always meet in the
Yes, we now have a regular venue of the Queens
Hotel in the centre of Leeds. After a year of meeting in upstairs rooms of pubs
and relying on someone to find us a space, it became clear we needed a more
permanent space. Alopecia UK kindly supports the cost of room hire in a meeting
room in the Queens and itís the perfect location because itís attached to Leeds
train station, perfect for those (like me!) travelling in from elsewhere.
What can people expect
from a Leeds support group meeting?
We get a good mix of
people coming to the Leeds group. I am lucky to be supported by regular
attendees. I think itís so important for group leaders to have a Ďregular crewí
to help welcome new members and it means itís not always me doing the talking!
We attract a lot of
new members, some who may come to just one meeting and get what they need from
that and others that come on and off throughout the year when they can make it.
The Leeds group has
a mix of types of alopecia, including alopecia areata (including both totalis
and universalis), androgenetic alopecia and scarring alopecias. All are very
welcome and we definitely operate on the basis of Ďhair loss is hair lossí
regardless of the type or severity of loss.
Some meetings are
simply a chance to chat to others about their experience, gain support, tips
and advice. Other meetings we might have more of a focus on a particular area.
In the past we have had a dermatology Q&A, a trichology talk, wigs Q&A
and headscarf tying demonstrations.
As I also work for
Alopecia UK as well as running the Leeds support group, my group members have
the benefit of being able to find out all about what the charity is up to.
Whatís the best thing
about leading the Leeds support group?
When someone comes
up to me at the end of the meeting to tell me how glad they are that they came
along. To know that Iíve helped in some small way to make someone feel a bit
better about things is extremely rewarding.
What would you say to someone feeling nervous
about attending a support group meeting for the first time?
Please come along to
at least one meeting to see if it will help. We really are a very friendly and
welcoming bunch. Many members will remember the feeling of nerves walking into
a room of strangers for the first time. Our meetings are really relaxed. If youíre
more of a listener than a talker, thatís fine. If people want to give me a ring
prior to the meeting, Iím happy to chat to them about any nerves/fears they may