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Cheryl, Co-founder

Female

Detroit, MI

United States

Profile Information:

Relationship Status:: Married
About Me:: I have been living with alopecia since 1991. Throughout the years, I have had alopecia areata and alopecia totalis. My life is not over, so there is still time for alopecia universalis. ;-) I have had many ups and down and find that I always come out on the other side standing tall.

It has always been a given for me to reach out to others with alopecia. I just did it naturally. I became involved in our local support group in Montreal, participated in the annual conferences of the National Alopecia Areata Foundation (NAAF), and also served as president of the Quebec Alopecia Areata Foundation (QAAF).

Someone once asked me what I planned to do after I moved to the USA. My initial thought was to attend or start a support group in Michigan, but I eventually settled on the wonderful idea of creating Alopecia World with my husband, rj jones, who was my fiancé at the time (2008).

On a personal note, I like to blend femininity and strength. A woman can be strong and physically capable as well as soft and feminine. For a long time, I thought I "had" to be one or the other, and I had a hard time finding my place. Blending both is very gratifying, indeed.

I also like to keep active. It does not have to be extreme. It can be a bike ride, walking, painting a room in the house, or cleaning the garage.

In April 2008, I married rj, a very special man that supports me in my alopecia and is the catalyst and the great mind behind the research and design of this site.

Please feel free to "friend" rj and me: We would love to make your acquaintance.

Welcome to our world… AlopeciaWorld.com!

PS: Don't forget to check out our book:

Whole in the Mirror: From Fractured Identity to Fierce Self-Acceptance:

Available on Amazon:
https://a.co/d/6emBEMY

Cheryl Carvery-Jones
co-founder
AlopeciaWorld.com
cheryl@alopeciaworld.com

"It's Hair Loss Support At Its Best"

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Do you have alopecia?: Alopecia areata
Are you age 18 or older?: Yes - I am 18 or older
Your Website (Leave blank if you don't have one):: http://www.alopeciaworld.com

Comment Wall:

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bee.

Haha, yeah...I'm sure you're not the first person that has had a hard time looking at it. I have this weird love for getting piercings, haha. But yeah, that makes sense. Mine did that for about a year before I just completely lost it all. I've only had it for five years, and sometimes like I still don't know how to deal with it. I mean I'm not even in school right now because the people making comments and getting made fun of is just too much for me to handle sometimes. Who knew hair could do so much to a person? I'm so glad I found this site though, I went from not knowing anyone on earth that had it to being about to talk to people with it in like five minutes, lol.

Apr 16, 2008
bee.

Yeah, amazing to say the least. And i'm not sure? I've never been to one...and I'm in NC. Which isnt a way too far trip to make, but I dont know...what goes on at conferences?

Apr 16, 2008
Eva Antonaki

Hi on the foto is my son Kevin 6 years old. he has alopecia since 2003 .Many times i´thinging that we don´t need hair to be happy but the are times i needhelp ,so i can hel Kevin to be alwways positive and happy.Thank´s to be ther Eva

Apr 16, 2008
bee.

Ohh, okay. Well thanks for telling me that, If anyone I'd probably come with my mom. But that sounds like a lot of fun and something that might really help me learn to be okay with myself :)

Apr 16, 2008
Tamika

Thank you..I appreciate that..because I have felt ashamed..that I struggle with it so..thinking there are so many people that are so worse off than i..so again thank you!

Apr 16, 2008
Mommy

Cheryl,

Thanks for the kind and welcoming comments. Thanks for caring enough to found this place and keeping up with all its new members. Lynn

Apr 16, 2008
Gena King

Thank you for creating this place. It is a wonderful thing I feel better knowing all these people are dealing with the same things. I got to know are u going bald for the wedding or wearing hair.

Apr 17, 2008
Frank

Chery,

I appreciate your welcome message from you and your husband. I have had au for 36 years and I have yet to have a conversation with someone else that has it. Isn't that bazaar when you think about it? This website is an incredible lift and I thank you for the opportunity that you have created for so many. How long has the site been up?

Apr 17, 2008
Harmony Restored

Thank you for introducing me to this site.

Apr 17, 2008
Gena King

That is great. ur gonna post pictures when the wedding comes right? Im working on being confedent with my looks ti. This site is helping so much. looking foward to the pictures.

Apr 17, 2008
Lesley Berry

Thank you for the welcome message, this seems a very friendly place to come to and I'm sure I will find it a great help.

Apr 21, 2008
Lee

Thanks for the welcome, looking forward to it

Lee

Apr 21, 2008
Carmella

Thanks for the welcome Cheryl!! I'm enjoying myself so far and I'm sure there is more to come.
Hugs
CAR

Apr 24, 2008
kastababy

Hi Cheryl!!!

Just left a message for RJ about the NFL Draft this weekend (I'm a Minnesota Vikings fan, and I presume that RJ is a Detroit Lions fan, so that would make us division rivals, LOL) -- I just wanted to see how you guys were doing!!!

Apr 27, 2008
narjiss

thks cheryl for welcoming am happy to join u and feel so good to c all this happy community :)

Apr 27, 2008
Kelly

Hi Cheryl, just wanted to let you know that because of you, Richard and AW, we are going to be starting a support group in the Phoenix area. We would not have met without this site. It has been a very long time...too long...in coming. Thank you!

Apr 27, 2008
Katie

Thanks so much for the welcome and for the site!! I hope the site gives me strength.

Apr 28, 2008
rj, Co-founder

Hey, Babe. I miss you too. :-)

Apr 28, 2008
kastababy

Yeah, my interest in the Stanley Cup ended when my Nashville Predators got beat by the Detroit Red Wings -- LOL (of course I was a Red Wings way before Nashville got a NHL team, so I am one of those unique hybrids we call a Pred-Wings fan!! :)

I am planning my trip now; apparently Louisville has something else going on that weekend because all of the hotels in the area are sold out!!

Apr 28, 2008
Alex

hi Cheryl, just wanted to stop by and say hi!

i absolutely LOVE this site...its such a great idea!!! you're so awesome =)

Apr 28, 2008
Kelly

Hi Cheryl, we are meeting this weekend to put everything together for our new support group, so I will add it to the forums after we nail everything down. Thanks for the reminder!

Apr 28, 2008
Alex

im working on it...im still in school so i have to try to finish up my finals early and fly there either thurs or friday and be back for school on monday...crazyness

i dont know how, but ill be there one way or another =)

Apr 28, 2008
Roger

Thanks for making it possible to meet others all around the world Cheryl. Say hi to RJ too.

See you in Louisville in a few weeks!

Roger.

Apr 29, 2008
Jill

Yeah, I thought it would be appropriate to keep it up there till then. ;o) I'm gonna change it aftr that.

Apr 29, 2008
cameille

hi cheryl and rj thanks for welcoming me its really lovely to be part of such a special group of people like us,and its comforting to know your really not on your own

Apr 29, 2008
cameille

thought i left message but didnt register,u may get two,anyway thanku both for welcoming me,its lovely to bepart of such a fab group of people like us all,and really comforting to know your not on your own

Apr 29, 2008
Margareta Marcks von Würtemberg

Thank you! It feels really good to come in to this world of frendly atmosphere.

Apr 29, 2008
as

Thank you for nice receiving!
Are here riband people.Not to be angry I don't know well English.

Apr 29, 2008
Ken

Thanks for the welcome, Cheryl. Very sweet of you!

Apr 29, 2008
Heidi

Hi Cheryl, yup it's me. Sometimes I'm VERY slow in keeping up with internet stuff. Anyway, thanks for the welcome and good luck with the new world. Looks like an active site. See you at the conference (I assume). H ...

Apr 30, 2008
Steve E.

Hello Cheryl. I am really struggling trying not to be too busy for people, especially those who are important to me. (That would include everyone LOL) Just want you to know what an inspiration you are. My brother's one lucky dude and you're one lucky lady! What a wonderful pair. Earth is blessed because of you. Love ya. Andrea said hello.

Apr 30, 2008
Bob Hershberger

Cheryl..Thanks for the greeting and welcome..I,like yourself have been AA for 35 years,so Im quite used to it..Its been something that definitly made me a better person..And this site is absolutely great..What a great outlet for so many Alopecia people..I wish there was something like this,for me, back in 1969..better late than never..Bob

Apr 30, 2008
Kaitlyn

See, the thing is, I may have come off as it being all new to me, but this isn't the first time I've been here. This is my third experience with Alopecia. The first time I lost patches, which grew back with cortisone shots. The second time, I lost all of my hair, and it grew back completely after two years of nothing. I had beautiful, chin-length hair that I constantly feared would fall out again. For five years, I had a full body of hair, then it all fell out. Usually I would have had at least like one hair regrow or something by now, but my doctor and I see nothing. She said there's no sign of it coming in anytime soon. I know I should be grateful that I may have hair again in a few years or whatever, but I'm dealing with now. I can't stand this struggle. How did you manage to gain such a positive outlook on this?

May 1, 2008
JeffreySF

Glad you liked it Cheryl

May 1, 2008
Erdal

Hi Cheryl,
It,s nice to have a welcome I am pleased
Thank you ...
Greetings

May 1, 2008
Amber

Hi Cheryl
i hope i enjoy my time here to. its hard to find support from my friends

May 1, 2008
Amber

No I didnt no there was a teen group. im going to bed though, but ill check it out tomorrow. thanks for telling me about it :)

May 1, 2008
Miranda

Hi Cherly,
No my daughter hasn't adjusted to the wig. But that's okay, I like her better with out it. She does ask to wear it once in awhile, so it's completely up to her. We are going to be flying to Phoenix to be seen by a pediatric dermatologist. Our dermatologist here says he specializes in pediatrics but also sees adults. I think it is going to be refreshing to hear what the pediatric dermatologist says. She's really excited because this will be her first time on the airplane! I also finally got her signed up on the MD Anderson registry. We were contacted the next day with more questions. I think they are interested that she is an identical twin, but only one is effected. I hope we can help them with their study.

I am doing well. I just registered my daughters for kindergarten on Tuesday. They were really excited. I was relieved because the only comments about Della were from the teachers, wondering what it was. She will be the school's first alopecian. I am surprised about that, but I'm sure it was bound to happen sometime. I am relieved that it went so well, and I hope it continues to go well. I am sure as she gets older, it will get more challenging. I think all of my stress about her beginning kindergarten made it worse, so now I think we'll take it as it comes. But naturally, I am a worrier. I remember that about 3rd grade was when kids really began to worry about their appearance. I hope it hasn't began even sooner as adult topics such as relationships and sex seem to come up earlier and earlier as time passes. I hope that she will get a grip on this and make it her identity, and not let anyone bring her down because of it.

How is everything going with you? I'm sure you have met amazing people here, as I have. I think it is wonderful what you guys have done here, thank you!

May 2, 2008
Brigitte

Bonjour Cheryl,
Thanks for your welcome, i just lost all my hair, a year ago.... i find that very difficult, i am very glad now to find people who are the same as me...... have a good day !

May 3, 2008
heathen

Thank you so much for the welcome! I am so happy to have found alopecia world!

May 3, 2008
Michelle (mom of Sam)

Cheryl, thanks so much for inviting me to such a wonderful community of people. You and RJ are amazing. You compliment each other in such a wholesome way. I am so glad to be here. Have a wonderful day! Michelle

May 5, 2008
Gerd

thanks for welcome !!!

May 5, 2008
Jessica

sure have! how about u?

May 5, 2008
Natalie Young

Hi Cheryl,

Thank you for the welcome. It seems like a great site, I wish in New Zealand they had more support like this.

May 5, 2008
Melissa

It went really well. I put a little blurb about it on my discussion about it. Thanks for helping me out by taking the survey! See you in a month or so!

May 5, 2008
Kristen

Hi Cheryl - you have a beautiful smile that just radiates warmth. I can tell you have a sweet heart. :-)

Thank you (and Richard) for creating this website. I'm so excited to meet other like-minded, positive alopecians and provide support where I can. Cheers to you both!

May 5, 2008
krissma bent

thank you for welcoming me to alopecia world :)
I see so many ppl on here not wearing a wig i hope one day that i will do the same but im still finding it hard after 17 years but seeing and meeting all of you has given me that little bit more confidence I thank you both for this site i love it im not alone after all x x x :)

May 6, 2008
Janet

Cheryl, thank you for your welcoming words. I have a really good feeling about this group of people so far.

May 6, 2008
Gena King

Thank you. Yes it does go bu a lot easier when you just come out with it. If they dont like my alopecia then they dont like me. There are plenty of fish in the sea.

May 6, 2008
kayla tucker

Hello, Thanks so much for welcoming me to this site.From what Ive seen so far Imgoing to like this site.

May 6, 2008

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