Why do you think there aren't many outside places of support for alopecia?

When I was diagnosed with alopecia areata 23 years ago there was no support online or elsewhere.  Over the years, probably within the last 10 years, more support has been available online, but there still seems to be a void of support outside of the internet especially in my surrounding region.

I've been wondering why...is it because there isn't a need for it or because online support is convenient or is it one's comfort level or is it because society at large doesn't see hair loss as a major issue?

I would really like to know your thoughts.

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Permalink Reply by Rose Marie' on November 18, 2014 at 12:53am

Hi

I've been involved with many groups over the years and what I have noticed is that people come and go.  Anything that is voluntary becomes a real commitment and people tend to find what they need and move on.  This is why the internet works so well.  With smaller support groups creating an environment that people want to attend can be difficult. 

There are some very good support groups outside of the internet though CAP (for children and parents), Be Bold (In the UK), Alopecia UK (In the UK), and of course NAAF (in the USA).  All very good organisations that do great work with helping those with alopecia.  

Rosy

Permalink Reply by Versida on November 18, 2014 at 1:15am

Hi Rose,

I hadn't thought of that it probably is difficult to create an environment that satisfies enough people, enough of the time.

I guess I don't quite understand why individuals would move on, I mean for most people alopecia is life-long and if one gets what they need I would think they would want to be there for the next person because until there's a cure there will be someone else.

Which do you prefer?

Thanks for responding!

Permalink Reply by Rose Marie' on November 18, 2014 at 5:02pm

Hi

In my experience individuals move on for many reasons, but mostly they have become very comfortable with their choices around their alopecia and just want to get on with life.  I personally think that is a sign of a very good support group...(people moving on), because what they are receiving is helping them to get on with life like they should. 

I think there is always a percentage of people that are able to give back and usually they are the core of whatever the group maybe.  In some cases it is the person's whole family that works to help others (like Be Bold in the UK or CAP, sometimes it is just the individual.  Giving back is a very rewarding result for anyone that has been through something that is life altering and as you can see there are many that do that here.:)

I like the thought of people giving back...but not everyone has the time or energy. :)

Rosy

Permalink Reply by Tallgirl on November 18, 2014 at 9:21am

!

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