A support group with a difference?

I am wanting to get some ideas and feedback on what you all think about a support group for alopecia sufferers with a difference / twist.

This is something i really want to do but i want to do things a little differently to the usual weekly meetings, not that i dont think weekly meeting groups offer great support because they certainly do and more credit to them! Its just i meet / talk with so many fantastic woman / girls / men who have alopecia and they tell me how much they are struggling to cope. Alopecia is hard, that i know and i want to do something that breaks the taboo i guess.

I met a wonderful lady recently who has had alopecia for over 40 years, we spoke on the telephone first and i assumed (lesson learnt, never assume) that as she had suffered from alopecia for such a long time she would have come to terms with it and be confident in her self. When we finally met up this was not the case, this amazing, wonderful and beautiful lady i saw before me didn't believe how amazing she was, and she certainly did not think she was beautiful. She was really struggling, alopecia had been dictating what she did in her life for the past 40 years, she told me she felt like a prisoner of herself. I felt heartbroken for her. When i got home from our meeting (i went to visit her at her own home) i could not stop thinking about her, things shouldn't be this way fer her, or for anyone with alopecia and it made me wonder how many other people might be feeling the exact same way at that very moment, how many other woman / girls / men with alopecia felt like 'Prisoners Of Themselfs' ?

Now for all of you that know me, or know a little about me i am not a massive business / organization with unlimited amounts of cash to throw into advertising and research so i did the first thing i could think of (that was free, i am not tight just a little thrifty lol) and i posted a free ad on Sheffield Gumtree. My ad was simple and to the point.

"Do you have alopecia? Need Support? Contact Emma"

To my amazment i actually got a response from a few people (not lots and lots but this is Sheffield Gumtree after all) I had teenagers, adults and even a few men contact me via email and text. I posted my ad on Gumtree thinking that if i could do something good, and help a few people that would be my good deed, but it made me feel terrible and i couldn't figure out why untill just recently!

I felt terrible i was talking to so many people that were struggling, i offered suggestions to them, local support groups, councelling, confidence tricks and assertivness tricks and do you know what nearly every single one of them told me....

  1. They felt local support groups would be too depressing, and they were too scared to go anyway
  2. The few that had actually been to their Gp's were told that councelling was not really available to them through the nhs, basically they were told to go home and get on with it
  3. Why even bother trying to make themselves feel better, they were far too depressed
  4. How could they become assertive when they didn't believe they were amazing individuals

I am 28 years old now (well i will be next week :-) and my hair fell our when i was 12 years old. I had good support at home from my dad, it meant nothing to him that i was bald, nor did his friends and work colleges bat an eyelid (obviously my dad had pre warned them lol) my dad encouraged me to walk around with my bandana on, without my bandana on, to answer the door with or without a wig, what ever i felt comfortable doing. To wear make up to make me feel better, to wear my favourite perfume etc... so i really am starting to belive that that kind of support and encouragment is mandatory.

So back to my idea (i got a little carried away there with the story!) a support group / metwork with a difference, a casual, fun, informative meeting of like minded people that share the same condition.... Alopecia. A place to talk about being upset but to ultimatly walk away feeling better, more confident, more beautiful (yes you are!) more assertive.

Alopecia has not stopped me finding a botfriend, having a family, running my own little business, in fact i would even go as far to say that alopecia has been an advantage to me, i know my market inside and out, i know what a sufferer needs and what most wig wearers want and im inspired everyday to do things by the people o meet and talk to.

Feedback please! Come on, dont be shy... let me know what you think..... xxx

Emma xxx
Advanced Wigs


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