That is an honest question and I really would like to hear the answers from everyone. Ponder it for a moment and let me know what you come up with. I have had Alopecia for 10 years, the last 6 of which have been with Alopecia Universalis. In 2008, I finally got to a place where I feel like I have accepted my ultra petite bald head and this condition. I can look in the mirror again and feel connected to the woman staring back at me. At one point, I disconnected from her and deemed her a stranger. Today she is my friend again. I embrace her and have decided to love her nomatter what. Now I love her in a way that I never have before. Imagine that? All these years going through this, I have never been a part of a support group. I can count on one hand the number of people I had ever met with Alopecia. Being at NAAF this year was the first time I have ever been around so many people with Alopecia and it was amazing. I felt at home and accepted. That is priceless and so very healing in an of itself! I could appreciate the beauty in me on a new level because I saw first hand the beauty in everybody else. The love and admiration I felt for them was the same connection they felt for me. I did not want that feeling to end or just come 1 time a year. As a person who organizes events all the time, it only made sense for me to put those skills to use to create something that would satisfy my soul and so many others. I decided to start a group called "The Alopecia Community of the Triangle". I have some ideas for what I want it to look like but more importantly, it needs to be what YOU need it to be. I can't play in the sandbox by myself. So level with me, what does a successful support group look like? What ingredients does it need to have that would make you want to attend? I hate to say "support group" because it has such a sad connotation to it. Now, don't get me wrong, I am all about cleansing tears and expressing emotions but I am not about consistent pity parties. I believe that after we express our feelings, we turn that frown upside down and talk about solutions. It has to be a place where there is love, support and positive affirmations. A place for friendship, fellowship and FUN with genuine people that are kind. A place for women, children, teens and men. For parents with children who have Alopecia and partners/loved ones who love someone who has Alopecia. God knows I am sure my husband would have benefited from having someone to talk to on those mornings I would not stop crying and could not come out of the bathroom! Those are some of the ingredients that I need, tell me what kind of group you would like to be a part of? The truth is, the people make the group so whatever we say it will be, it shall be! I am here for you. Tell me what you want.............

Views: 24

Comment by Rose Marie' on August 31, 2009 at 4:10pm
Hi

One of the things I would love is for all support groups to combine and support each other in their efforts to help those with alopecia. Their are support groups in NZ, Aus, USA, UK, Europe. My dream and hope is that one day someon will come along with the energy and vision to combine all support groups to be one fabulous group where people are supported and where the focus is on moving on to a better life with alopecia.

I think you have the perfect attitude. Everyone must grieve but the joy begins when proactive choices start to be the focus.

I think AW is the best because of the acceptance of all. Education so people can make proactive choices based on knowledge. Inspired, motivated people (like yourself) to guide an organisation. Emotional support for all those that need it. (I'm with you - no pity parties please). I would like a group where membership is fluid and the want is for people to move onwards and upwards to lifes that are full of joy. That would be my want from a support group.

Good luck with your new group.

Rosy :)
Comment by Carolyn on August 31, 2009 at 7:04pm
Hi there! so excited you are doing this. I don't really know how to answer your question, other than to say, just to be in a community/fellowship of people who understand what we go through. Meeting Debbie Fulller who is the Freedom Rep in the area, was a powerful experience for me!! Just sitting next to someone and having them pull off their wig was GREAT!!!! I'm very interesting in attending! Let me know what I can do to help!
Comment by JeffreySF on August 31, 2009 at 8:53pm
Hi Sandra,
I know exactly how you feel in regards to the NAAF Conference.
There is nothing else like it. It is so so good for the soul. I have been twice now. One for each year with alopecia. It's an event I will never miss if I can possibly help it.

I am also faithful member of the San Francisco Local NAAF Support Group. I have so many awesome experiences from attending the meetings and the get togethers.
Some of the stuff we do:
A group of friends meets for pizza before the meeting.
At the meetings we have an introduction of ourselves and share our emothins and experiences.
There is laughter and sometimes yes there are tears. But thats okay. It's about supporting one another. I find support brings strength and acceptance. Not a sad thing at all.
We also have Dr Vera Price and her Medical Fellows at the meetings for any medical questions and answers.
After the meetings we might go for a drink.
More stuff we do.....
Bald Boyz do Lunch before we go see Athena for our eyebrow tattooing
We had a TequillaPalooza at Tommys.
We were on MTV True Life.
A group of us from the NAAF Conf and friends at Alopecia World are now going to Boston for a get together.
Who wants to join in on that???

So what do I want in a support group. Exactly what I have. Relationships that build charactar and strength. Creating a bond that will last forever and a day.

Jeffrey
Comment by Sandra Dubose-Gibson on August 31, 2009 at 10:06pm
Hi Jeffrey. Thanks you for sharing that with me. That is a great idea to have medical doctors attend and answer questions. I will definitely make that happen once we get things off the ground and have dedicated members. I would hate to invite a doctor and have little attendees. So, bald boyz do lunch and you have a dedicated person to do your tattoos? I want in! lol. Where can I check out the MTV True Life video clip? I would love to see that. That must have been a blast. I believe you captured the essence of a support group when you said, "Relationships that build charactar and strength. Creating a bond that will last forever and a day." That is what I want to be a part of and hope to create at A.C.T. If anybody out here in the Carolina area wants the same things I do, I sure hope to see you there.
Comment by Galvin on September 1, 2009 at 12:34pm
I would like to be able to attend an alopecia gathering that is not at a five star hotel in a downtown
area. NAAF is great for "newbies" but it would be nice to attend something a little less expensive and with
some outdoor activities, beach, ski resort, camping....whatever.
Comment by Tracy I Ridgely-Guthrie on September 1, 2009 at 3:45pm
I have never been to a conference, but it sounds like I need to be at the next one, how do I find out about that? What I would love and need from a support group, is comfort and understanding. Sometimes I need a chance to just vent or cry or even laugh with brothers and sisters who understand because they are going through the same thing. Alopecia is a big part of who I am, but it is not everything and sometimes I need to talk about that too. I like what Galvin said about the low-key meetings also, I would do both
Comment by Mary on September 1, 2009 at 5:01pm
Congratulations on where you're at, Sandra. I love how you expressed yourself.

What I want most of all is to just hang out and be in the company (particularly in public places) of bald women - women with alopecia who are comfortable being bald. I'd also love to be around guys with alopecia...but what I hunger for is the sense of being normal as a bald woman, not the only one in the room.

Mary
Comment by Tuesday on September 1, 2009 at 11:15pm
Your last phrase, Mary, is particularly poignant to me. "Sense of being normal"! Yes !
Comment by JeffreySF on September 2, 2009 at 12:43am
Hi All,

Sandra,
Our local NAAF group is so awesome. We are all really close to one another.
It's nice to have the MD's present to give the medical facts and answer questions.
We have a great time when we go for our tatoo sessions. We have woman here in SF that is spectacular. www.athenaberverlyhill.com is the addy.
I dont have a CD of the MTV True Life episode yet. I'll have work on that and share. This was one of the most emotional and bonding experience I have shared with these friends.

Galvin,
I am truley a NAAF supporter all the way.
There's nothing like being in a place where you are just like 600-800 other alopecians of all ages, races and gender.
I just posted an Event last night for a Get Together in Boston. It's actually Medford MA. It's not a five star hotel in a Downtown City. Check it out. Join in if you like. It would be great to meet you.

Tracy,
You have to go to a NAAF Conference. It will change your life. You will feel so impowered with the experience. Boston???

Mary,
You are normal. You have embraced yourself.

Yours Forever and a Day!!!

Jeffrey
Comment by Sandra Dubose-Gibson on September 2, 2009 at 2:07am
You guys are all so yummy! Thanks for chiming in and sharing your thoughts with me.

Galvin, the NAAF conference is for newbies? That's interesting. I have had Alopecia for 10 years but since this year was my first time at NAAF I feel like a newbie. Does that count? I have to say, I'm all about 5 star hotels but it sounds like I need to hook up with you and learn to appreciate the outdoors and simplicity a bit more. My friend Michelle would say that "you've got a little granola in you!" That is meant in a good way. It just means that you appear to be a nature outdoorsy type of person like she is. It's a compliment. I hope you took it as such. Having been born and raised in NYC, I could use a little of that :)

Tracy, do yourself a favor and make the NAAF conference happen at least once. You will be changed from the inside out. I was so hyped up when I left that I flew home without my wig! I don't normally go around without it on a day to day basis, but I left feeling so comfortable in my own skin that putting it on did not even make sense. Can you imagine?

Mary, I can dig it. I don't think anyone wants to be the only one looking different in the room all the time. There is great comfort in togetherness.

Jeff, get that MTV clip on youtube as soon as you can. We want to see you on tv superstar! I want to say, I know him!!!!!!!! lol.

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