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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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Antoinette Brush

than you Cheryl for the welcome :)

May 1, 2011
Brenda B

I'm well. Thanks for asking. I had been pretty inactive in the last couple of years while the reality of what was happening took over, pretty much, my life. But now i'm great. I've become a different person and things aren't such a big deal anymore. I survived an experience that would have seemed ridiculously impossible to overcome 5 years ago (and then some!) I have since shaved the remainder of my hair - so i no longer watch it fall and i have an aresnal of wild wigs in different color and styles that i rotate frequently. I often think I have been enjoying myself wayyy too much! Thanks for giving me opportunity to find others and hopefully help them to reach the point of acceptance and love i have.

May 1, 2011
Devin

Thanks Cheryl, although I have had a few people say instead of "To baldly go where no bald man has gone" it should be no ONE has gone. lol

May 1, 2011
Susana Montalvo

Thank you very much! I am new to the website and not very familiar with all of the features, but I am ready to learn.
Susy

May 3, 2011
Lorraine

Thank you for the welcome Cheryl!

May 3, 2011
JeffreySF

Hi Cheryl,
How are you?
Can you believe Roger is going to be a Daddy? YAY!!!

May 4, 2011
JeffreySF

All is good here. Couldn't be better!!!
How about things with you?

May 4, 2011
Catharine

Thanks for the welcome! It's great to find some place where I can talk about this.

May 4, 2011
Roger

Thanks Cheryl!

Hope to see you and Rj in Los Angeles.

May 4, 2011
B.C. The hairless Guy

Thanks

May 4, 2011
Lisa-Lynn Marini

Thank-you Cheryl for the beautiful comment, meant alot to me :) have a beautifu; day

May 5, 2011
R0BB

May 8, 2011
Lori Schuler

Thank you for the welcome!

May 8, 2011
Basil

Thank you Cheryl, I am so happy to have found all of you. It is great to see everyone here baring it all, I don't get a chance to talk about AA much or how it affects day to day life, even the little things. To see all of the conversations and groups that are here is amazing. I feel very lucky to be a part of this community.

May 8, 2011
Adél

Thank you for the welcome!

May 9, 2011
R0BB

Hi Cheryl - Just a 'hobby'.
Glad you like .

-R0bb

May 9, 2011
Housefly

Thank you very much Cheryl. This means so much to me. You're a real hero..

May 10, 2011
Kendal Rauh

Holy cow, Cheryl! I've gone viral! LOL Wouldn't have been possible without you! :)

May 15, 2011
Samantha

Hi Cheryl! and thank you so much for making me feel welcomed to this wonderful place! It has taken me a few months to find a place where I can relate to other people with Alopecia and feel like I have something in common with other people!. Its so great to know that you are doing so much for people like us. Its really difficult to talk about Alopecia with people who dont suffer from it, as they dont know what its like to live with until they have it them selves. My husband is sad that its happening to me but at the same time, he can not fix the problem for me and that hurts him. Yeh, i guess it affects not only your self but the people around you who love you. I am really looking forward to being an active member on your website here, I feel like this is going to help me sooo much. Thanks again Cheryl for your welcome!

May 16, 2011
Amir hoshang mosaffa

Hi

thanks my friend

May 16, 2011
Jules

Thank you! I hope to meet others with AA that I can share my thoughts and fears with.

May 19, 2011
coccinelle

Thank you for your support, I forge ahead even if it is difficult, I wish to find on your site of the moral support goodbye

May 19, 2011
TiffanyGrace

Thanks Cheryl! Hopefully, my experience with alopecia will help someone else out there :)

May 20, 2011
David B327

You're very welcome. I'm glad to be here.

May 21, 2011
Lili Añel (aka Eulalia)

Hey Cheryl, my gig June 10th is just a regular gig on my calendar at a cafe in Ardmore, PA. What I recommend you DO come out to is the benefit I've put together to support Children's Alopecia Project, I will be performing along with other musicians I've invited and some surprise guests. Ms. Delaware will be a guest speaker. Takes place Sept. 16 2011 at World Cafe Live in Philadelphia. I will post it here. Proceeds to go to CAP. Check out my blog: http://www.lilianel.org/mfcap.html. Hope you'll consider coming to this event.

May 21, 2011
Sarah Eisenhardt

http://www.alopeciaworld.net/events/cap-picnic

Are you joining us for the picnic in Troy, MI on June 4th?

May 25, 2011
Tim Bowers

Hello Cheryl- Thank you for the welcome. I'm a children's book illustrator and one of my latest books, titled: Memoirs of a Goldfish was written by a Detroit author and TV news anchor, Devin Scillian. Maybe you recognize the name?
Anyway, thanks again for the welcome. T.B.

May 26, 2011
Theresa

Thank you! I'm so glad to have found your site. I'm looking forward to making new friends and receiving lots of support.

May 26, 2011
CeliaGee

Thanks...it's the beginning of my journey to understanding and accepting and loving myself for all that I am.

May 26, 2011
Amir hoshang mosaffa

Hi Cheryl.tnx for your comment.i have a new family now.hereeeeeeee

May 29, 2011
Annemarie

Thanks for the welcome, Cheryl. Nice to meet another canuck - I grew up in Victoria BC but lived in Montreal for 3 years (Dr. Penfield by McGill). Now we live in Scottsdale, Arizona - talk about a complete cultural change!

I'm particularly looking to contact others who have medically induced alopecia, specifically circatricial alopecia. Any place in particular on the site where I can find those? Thanks.

May 29, 2011
Jennifer

Thank you Cheryl, I look forward to getting more involved!

May 30, 2011
Calipso

Thank you for your nice welcome!:)

May 30, 2011
Chiaroscuro

Hi Cheryl! Thank you for your welcome message. The nickname aside, my name is Shruti. Pleasure to meet you and be a part of this community. Cheers!

May 30, 2011
VASILIKI

Thank you Cheryl!!
I want to give you my congratulations for this great site!! From the first time I visited alopecia world I realised that I 'm not alone... Thanks!!

May 30, 2011
Annemarie

Thanks for the reply, Cheryl. I have been in touch with CARF, in fact am waiting to hear from a doctor they've recommended as medical sponsor so that I can go ahead and set up a support group here in Phoenix.

My concern (as with many others with CA) is how to keep the head covered - with the inflammation and itching it's pretty well impossible to wear a wig. Don't feel like I want to spend the rest of my life wearing a hat of some sort. Anyone with suggestions?

May 30, 2011
Chiaroscuro

Red Ribbon

May 31, 2011
Malcolm Walker

thank you very much : ) i really appreciate it

Jun 7, 2011
Raj

Thank you for your welcome - looking for people who want my contribution(my body) or contributing to experiment and make a successful cure for this disease.
I die daily with a fear about inheriting this disease to my child for whom i am waiting. I dont want him/her to face all that i have faced ...

Jun 20, 2011
Meggi Harper

thank you much. i appreciate it and this wonderful site :)

Jun 28, 2011
ahmad

Welcome thank you for your welcome good and I hope that we are one family you my thanks and appreciation

Jun 28, 2011
Jools

Thankyou, good to know there are other people like me. Normal.

Jun 28, 2011
Lanie DeBry

Thanx for the welcome, hehe. It was the recent conference which was my 5th or 6th conference.

Jun 29, 2011
jean

HI CHERYL, I THANK YOU FOR HAVING THIS WEBSITE. I READ YOUR MESSAGE TO ALL AND I HAD THE RELIEF OF FREEDOM IN MY LIFE. I HAVE ONE MORE PLACE TO SHOW MY NEW LOOK AND THAT IS AT WORK. I KNOW GOD WILL GIVE ME WHAT I NEED TO GET THROUGH. IT TRULY IS A JOURNEY AND PROCESS TO GO THROUGH .

THANK YOU, ALL I HAVE READ AND SEEN ON THIS SITE IS AN ENCOURGMENT TO CELEBRATE THE NEW ME. HAVE A GREAT DAY!!!

Jul 4, 2011
Mary

I felt a huge "ting" of regret at missing the conference. On Friday of that week, I drove from San Diego right past LA on my way to the Balkan music camp, and I really felt it! But, life is choices. Coming back from the long UK trip, and going to the music/dance camp only 4 days later, it just wasn't possible.

Thanks for featuring my blog about my absence, by the way. It's been a crazy 2 months and I'm happy to be home. I hope to make it to the conference someday.

Do you have any local plans for August 6, International Alopecia Day?

Jul 4, 2011
Modest Mommy

This comment is so honest and close to my heart. I need this so much right now. "I was also very relieved to no longer be hiding. I was so stressed living in the world with a wig. I became afraid of high winds and people standing behind me, I always sat against the wall, or in the back of a theatre. I became tense when someone hugged me, fearful if a train or a bus stops quickly, fearful of a man trying to put his hands through my hair or even brings his hands close to my face, fearful the wig could get stuck on something or, worse yet, that someone will notice that I am wearing a hairpiece. I was very fearful of how I was going to be accepted by the outside world, men in particular. And if they didn’t accept me, then what would I do? I just plain became fearful."

Jul 5, 2011
Avi

thanks, cheryl! i really appreciate what you and your husband have created here. thank you for that.

Jul 7, 2011
JeffreySF

Hi Cheryl,
Stopped in to say hello.
Missed you at NAAF this year.
Hugz!
Jeffrey

Jul 7, 2011
JeffreySF

Hi Cheryl,
I miss you too! It wasn't the same without you and RJ there. I'll never forget my first year at NAAF with You, RJ and Roger greeting me as soon as I walked in.
Big Hugz to You and RJ!!!
Jeffrey

Jul 8, 2011
Kelci

Hey Cheryl!
I wanted to talk to you because my film about a girl with Alopecia is now in production. We are looking for some resources since it's a student film and help with extras. I would like to get people with Alopecia as involved as possible. We will be filming in the Detroit area July 31st-August 14th. Let me know if you have any interest. Thanks! Miss you! -
Kelci

Jul 8, 2011

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