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.
Thank you for your note and kind welcome and thank you also for this website. My wife and I are trying to educate ourselves and at the same time trying to provide love and support to our daughter. We are actually quite impressed with the way she has been able to handle it. This week we have scheduled two appointments at wig places. I've been impressed with her friends who have been highly supportive as well.
Thank you for your welcome and for the information. I am very excited about joining Alopecia World and will definitely take advantage of the wonderful support and info. you seem to provide. Thank you very much.
I am slow to start this connection process; which is such a dichotomy considering I have no support system. So today is my start date. This truly is a encouraging, inspirational, honest and authentic community via the internet. I am grateful for everyone. For now unknown personaly, yet I have no doubt that there will be a sense of knowing in a spiritual and humanistic sense......
Thank you and your husband ,Cheryl! It was a great idea to create this community .
The people who has not this problem, can not understand me, but I can know now how feel themselves the other people who has this problem.
hey cheryl! thanks for seeing up such a great site :) is great support when im feeling a bit down in the dumps. doing good tho! the sun is shining, the sky is blue and i have an indian head massage on the way...cant complain :) how's everything your end? x x
merci beaucoup pour ce site trés complet dommage qu'il n y en ai pas autant en france j'aurais aimer savoir s'il y avait des personnes ayant le méme probléme que moi habitant à coté de chez moi... j'habite à besançon france pas loin de la suisse je suis encore en traitement mais rien ne s'arrange.
Hi, thank you for accepting my friend request and for creating Alopecia World. Because of this site I have learned that I am not alone with this disease.
It is so good to see that there are strong people like you who learned to accept and to live with this condition. I hope that one day, when I am a little bit older I can deal with Alopecia like you do.
I wish you all the best! Greetings from Germany, Mia
Wow! Ask me why am I just now seeing your comment?! I am still learning AW. I don't quite know my way around just yet. Thank you for reading my blog. I was feeling some kind of way and I just began to type how I was feeling at eh moment. I am so looking forward to your comments. Even if you do not write anything, I am already flattered that you took the time to read it in the first place. ;) Thanks...blessings
Hello, Cheryl. I echo the thanks from others for this site, which I just found last week. I don't have much time to spend on it, but I'm hoping to find some wisdom, inspiration, and acceptance of myself the way I am. I have a question for you in the meantime: when and how did you decide to go bald (shave)? I've been thinking about this for quite a while, but many people discourage it. How did you make that decision? Pam
Thanks Cheryl we saw our grandson in Adelaide and we are having him up for a week, we are near the theme parks so we are going to be doing the roller coaste thing. Going to Thailand again next week a quick 5 day trip,I hope. Things are good retirement is getting to be comfortable.
Jack is 14 and the hormone thing is kicking in which makes visits interesting, and of course conversatns don't last long now since he got so cool. Pat is over the whole travel thing she has become a home and hearth kinda gal, to be honest I am not so keen anymore, we live in a real tourist area and it's such a Nic e place we feel lie we are always on holiday. We are going to a rally to today in support of refugees doing some chantinetc, takes me back to the anti Vivetnam days of the sixteis, will,posit some pics on my FV site. Stay frosty and stay in touch.
I found this site as I was in search for testimonials from those suffering with hair loss. Thank you for sharing your story and providing a forum whereby so many are blessed.
You all are so brave. I am so proud of you. I am not "there yet." I keep the baldness in the privacy of my own home. One day I will be as brave as you all!!!! I think there is an INdia Ari song somewhere in there --"I am not my hair" I want to be like you ladies when I grow up.
You all look like you are having so much fun. I would like to come to the next event!!! Oh please I would like to be amongst all of you feeling free and accepted.
I just wanted to thank you and your husband for starting this website. Seeing so many brave people dealing with alopecia has helped me feel much more confident. Thank-you.
Hi Cheryl! My name is Catherine. I am the mom of Naomi, my beautiful three year old daughter. I joined to become connected to a community that will help me educate and encourage her to accept her how she is and be confident. I am so excited!
Hi Cheryl! congratulations on the site and thanks for having me. I am living a very important year and also hard, I'm getting married in September and have some fears many expectations, I hope that new friendships in this community can help me deal with all this.
Hi Cheryl! Thanks so much for this site! I was just recently diagnosed with AA and just browsing through this site and reading other's stories has helped me so much. I am still coming to terms with this as I am in the early stages of my disease. I am waiting to get in with a specialist later this month. I have found the hardest part so far to be the guilt over my feelings when others have life threatening illnesses. Just taking it one day at a time and hoping for the best.
:) Thank you Yes, article was good awareness. Hope all is well, went back to work fulltime so I'm not on comuter as much xoxo Think of you often! Margs
I'm a barber with alopecia.. And would of never picked up a pair of clippers if I didn't have it. Embarrassed to go to a barber I learned to cut my own by trying to hide bald spots. Today I have my own shop and able to provide for a family. I consider my successful because I love what I do and would of never started doing it if I didn't have alopecia...
So glad to be back on this site Cheryl. Ray is doing great and now helps others how to deal with Alopecia. I'm very proud of him. This year we are going to the Children's Alopecia Project camp, looking forward to going.
Cheryl: Things are starting to finally take shape. Is it okay to share my project here on AW about my book project? If so, how would you like me to go about that? I'm super excited about the progress it is making, and can't wait to share it with you. I need to catch up with you again before too long to confirm some things that we talked about back in April. I look forward to hearing from you. I hope things are well for you.
Hi Ms. Cheryl , I'm Jayla and I'm so happy you have a place for us to come to . I didn't think there was anyone else's like me . I am so glad my mm found this place. Wow , there are a lot of kids and adults like me. I can't wait to meet more people like me . Thank you Ms Cheryl
Tony
Thank you for your note and kind welcome and thank you also for this website. My wife and I are trying to educate ourselves and at the same time trying to provide love and support to our daughter. We are actually quite impressed with the way she has been able to handle it. This week we have scheduled two appointments at wig places. I've been impressed with her friends who have been highly supportive as well.
Nov 20, 2011
strklydkly
Hi Chery,
Thank you for your welcome and for the information. I am very excited about joining Alopecia World and will definitely take advantage of the wonderful support and info. you seem to provide. Thank you very much.
Nov 20, 2011
Kycie
Nov 22, 2011
Natalia
Thank you and your husband ,Cheryl!
It was a great idea to create this community .
The people who has not this problem, can not understand me, but I can know now how feel themselves the other people who has this problem.
Dec 2, 2011
velvet
hey thanks for showing me that i wud have never known :) greats to know some appreciates wat i put thanks xx
Dec 3, 2011
LilyBell*Murphy'sLawLuvsMe
Thanks for accepting my friend request : )
Dec 5, 2011
Anastasia
Thanks for the compliment =)
Dec 5, 2011
thinlizzyfairy
hey cheryl! thanks for seeing up such a great site :) is great support when im feeling a bit down in the dumps. doing good tho! the sun is shining, the sky is blue and i have an indian head massage on the way...cant complain :) how's everything your end? x x
Feb 3, 2012
Tanya
Hi Cheryl and RJ!
I want to thank you for creating Alopecia World. Thanks to you we are now running a very active and positive support group in Vancouver, Canada!
( On the technical side, how do you manage to create such complete web application? )
I wish you all the best and, continue to be amazing!
xoxo
Tanya
Feb 4, 2012
tharradin stéphan
merci beaucoup pour ce site trés complet dommage qu'il n y en ai pas autant en france j'aurais aimer savoir s'il y avait des personnes ayant le méme probléme que moi habitant à coté de chez moi... j'habite à besançon france pas loin de la suisse je suis encore en traitement mais rien ne s'arrange.
Apr 5, 2012
Mia
Hi,
thank you for accepting my friend request and for creating Alopecia World. Because of this site I have learned that I am not alone with this disease.
It is so good to see that there are strong people like you who learned to accept and to live with this condition. I hope that one day, when I am a little bit older I can deal with Alopecia like you do.
I wish you all the best!
Greetings from Germany, Mia
Apr 6, 2012
Joe S.
Finally!
Apr 6, 2012
Theresa
Wow! Ask me why am I just now seeing your comment?! I am still learning AW. I don't quite know my way around just yet. Thank you for reading my blog. I was feeling some kind of way and I just began to type how I was feeling at eh moment. I am so looking forward to your comments. Even if you do not write anything, I am already flattered that you took the time to read it in the first place. ;) Thanks...blessings
Apr 8, 2012
HBLady
Hello, Cheryl. I echo the thanks from others for this site, which I just found last week. I don't have much time to spend on it, but I'm hoping to find some wisdom, inspiration, and acceptance of myself the way I am. I have a question for you in the meantime: when and how did you decide to go bald (shave)? I've been thinking about this for quite a while, but many people discourage it. How did you make that decision? Pam
May 13, 2012
Denise
Hi Cheryl , i hope all is well and i am so thankful to you and your husband for starting this sight. i am loving the support on this site.!
May 22, 2012
Roger
Hi Cheryl.
Will I see you in DC?
Jun 12, 2012
moonflower
Hi Cheryl:
Thanks for the friend add and thank you so much for this site!
Peace and encouragement,
Marcy
Jun 12, 2012
Roger
Nice Cheryl.
Not this year. Adam is too young. But they will join me in St.Louis next summer =)
Say hi to Rj from me =)
Jun 13, 2012
BTB (John)
Jun 15, 2012
BTB (John)
Jun 15, 2012
Allison
Thank you for the add!! I really appreciate this site. Thank you!! : )
Jul 5, 2012
Vesselsong
I found this site as I was in search for testimonials from those suffering with hair loss. Thank you for sharing your story and providing a forum whereby so many are blessed.
Jul 7, 2012
youarebeautiful
You all are so brave. I am so proud of you. I am not "there yet." I keep the baldness in the privacy of my own home. One day I will be as brave as you all!!!! I think there is an INdia Ari song somewhere in there --"I am not my hair" I want to be like you ladies when I grow up.
Jul 22, 2012
youarebeautiful
You all look like you are having so much fun. I would like to come to the next event!!! Oh please I would like to be amongst all of you feeling free and accepted.
Jul 22, 2012
youarebeautiful
I don't live in Detroit so I will not attend. Thanks for commenting back though. I'll get to another event. Thanks again.
Jul 23, 2012
Piotr
Aug 4, 2012
ASRN
I just wanted to thank you and your husband for starting this website. Seeing so many brave people dealing with alopecia has helped me feel much more confident. Thank-you.
Sep 7, 2012
Kay
Sep 28, 2012
Miss Peaches
Thanks for the welcome Mrs.Cheryl! So glad i found Alopecia World.I feel im among people that really understand.
Oct 4, 2012
Dj
Oct 5, 2012
Naomi_My Heart
Hi Cheryl! My name is Catherine. I am the mom of Naomi, my beautiful three year old daughter. I joined to become connected to a community that will help me educate and encourage her to accept her how she is and be confident. I am so excited!
Oct 5, 2012
Lori
Thank you Cheryl, I haven't been on lately but I am so happy that I found this site. It's so nice to know I'm not alone. Thanks
Oct 13, 2012
PhillyNutz
Thank you for welcoming me. Happy holidays to you.
Dec 27, 2012
JeffreySF
Hi Cheryl,
I miss you too!!!
Will Leo and I see you and RJ in St Louis this year?
Hugz!!!
Jeff
Jan 30, 2013
JeffreySF
Hope to see you there!!!
Jan 30, 2013
Mark Camora
Mar 20, 2013
Rhoda
Dear Cheryl and RJ,
You guys are angels for coming up with this site.
Take care and God bless you.
Hugs - MommaDoray :)
Mar 26, 2013
Josi
Hi Cheryl! congratulations on the site and thanks for having me.
I am living a very important year and also hard, I'm getting married in September and have some fears many expectations, I hope that new friendships in this community can help me deal with all this.
Mar 27, 2013
bamakelly
Hi Cheryl! Thanks so much for this site! I was just recently diagnosed with AA and just browsing through this site and reading other's stories has helped me so much. I am still coming to terms with this as I am in the early stages of my disease. I am waiting to get in with a specialist later this month. I have found the hardest part so far to be the guilt over my feelings when others have life threatening illnesses. Just taking it one day at a time and hoping for the best.
Apr 2, 2013
Shelly
Thanks Cheryl, I'd LOVE to get together with them.
I've gotten so brave and am enjoying my new round freedom.
Apr 5, 2013
margaret staib
:) Thank you Yes, article was good awareness. Hope all is well, went back to work fulltime so I'm not on comuter as much xoxo Think of you often!
Margs
Apr 22, 2013
LeslieAnn Butler
Hi Cheryl,
Thanks for welcoming me, but I have never left!
How are you, beautiful woman?
Leslie Ann
May 10, 2013
Liz
Thanks Cheryl for sharing your stories and of course for creating this site. You truly are remarkable! Inspiring to say the least.
Jun 3, 2013
Marte
Jun 11, 2013
Funnybone
Hi Cheryl! I've seen the pics of the NAAF conferences, and they look great. What do they do at these conferences?
Jun 11, 2013
Mom2Ray
Jun 19, 2013
Theresa
Thank you Cheryl.
Aug 20, 2013
Deeann
Cheryl: Things are starting to finally take shape. Is it okay to share my project here on AW about my book project? If so, how would you like me to go about that? I'm super excited about the progress it is making, and can't wait to share it with you. I need to catch up with you again before too long to confirm some things that we talked about back in April. I look forward to hearing from you. I hope things are well for you.
Oct 16, 2013
Lovelife
Oct 20, 2013
LeslieAnn Butler
Goodie, I would love to meet you...when are you coming out here to Portland?
Oct 22, 2013