Replies to This Discussion

Permalink Reply by Judie Pokakaa on August 30, 2008 at 2:08pm

Hello all, I am Judie and I have a close friend Kandi that has alopecia. She is a beautiful bright young lady. She has had alopecia for over 8 years. She has had a hard time dealing with it. I am just looking for ways and ideals to make her feel better about herself. I wanted to also learn all about Alopecia. The more I know, the more I can help. I am trying to talk to as many people as possible. Eveybody here has already started giving me lots of information and help. Thanks so much to everybody.

Permalink Reply by rj, Co-founder on August 30, 2008 at 10:37pm

Judie, you're to be commended for being there for your close friend Kandi. No doubt, she's very grateful for you and has been strengthen by your great compassion and genuine concern.

I'm a member of Alopecia World not only because I'm one of its founders, but also because my adorable fiancee has alopecia. In fact, because I cared about her as a person, and not just as a prospective partner, I started learning about alopecia long before she and I started dating. That's why, only a month after meeting her on MySpace, I was inspired to research and write this lengthy blog article about alopecia.

I've learned a lot more about alopecia and, more importantly, alopecians since I wrote that article in June 2007. And I think the greatest lesson I've learned about supporting my alopecic friend and lover is that I need to be a great listener. I was reminded of this a few days, when I discovered some poetic lines from an 1859 novel. Above all things, she needs to be confident that I'm a true confidante.

As for what I'm doing to make the world a better place for alopecians and others, well, I not only help create Alopecia World but I also reach out to others through my writings, my music (I play keyboards and lead the "praise and worship" team at a non-denominational church), and by spreading what I call pro-feminist good news to every man that will listen (I also lead the "men's ministry" at church). But, by far, I've offered my greatest gift to our world by trying with all my heart to be a great father to my three amazing daughters. :-)

Permalink Reply by Jols on September 11, 2008 at 10:04am

I joined alopecia world as a way to support my sister (Andrea on this site), who has alopecia areata. I can't pretend to know what it's like to have alopecia and so I try to support any way I can.

Permalink Reply by rj, Co-founder on September 16, 2008 at 8:54am

Jol, judging from the thoughts you shared, you're providing your sister with excellent support. She's blessed, indeed, to have you in her life, and I'm sure she knows it. :-)

Permalink Reply by rj, Co-founder on September 16, 2008 at 8:59am

Ditto, Elwy. As I mentioned above, I really started researching and learning about alopecia areata when I first learned that my fiancee has the condition. However, I've known others with the condition and even dated someone else who lost her hair due to chemotherapy. I'm inquisitive, too, and all the more so when I'm in love. ;-)

Permalink Reply by theantichick (Shannon's Mom) on September 15, 2008 at 6:18pm

I'm here because my 11 year old daughter has started losing her hair to alopecia, currently AA. I'm afraid it's progressing toward AT, we see the pediatric dermatologist Oct 6. I'm trying to learn as much as I can about not only the medical aspects (which I've researched to death already) but about the practical and emotional aspects, so I can support her and help her through this. I'm sure there are other times as bad as the 1st week of 6th grade for this to happen to a girl, but this has to rate right up there. :-/

Permalink Reply by rj, Co-founder on September 16, 2008 at 9:07am

It's wonderful that you're learning, not only about the medical condition per se, but also about the social and psychological aspects of coping with it. I have a 14-year-old daughter who has spent all her life coping with eczema, which has also affected her emotionally as well as physically. Like you, however, her mom and I have always tried to make sure she had what she needed in terms of emotional support and medical supplies. Our consistent support has certainly paid off over the years, and I'm sure yours has and will, too. :-)

Permalink Reply by Linda on September 16, 2008 at 4:32pm

Hi I joined because I have been a hairdresser for a long time but for the last 12 years have been working within the hair loss industry in the UK.
The thing that gets me the most is the lack of simple advice when a patient is newly diagnosed with alopecia.
I do not own a business I am an employee. I am not on here to promote a business, only to give advice on wig choices if I can.
Also I learn a lot from my clients every day. They're obviously better than me at telling me what works and what doesn't!
To make me better at what I do I'm hoping you will teach me more !!
:-))

Permalink Reply by rj, Co-founder on September 16, 2008 at 10:01pm

Hey, Linda, it's great that you're here to share your knowledge. Do you know about the wig forum here in Alopecia World? Perhaps you can respond to some new and older inquiries regarding wigs, hairpieces and the like. :-)

Permalink Reply by Sonia on November 13, 2008 at 9:30am

Hi, everyone. I'm Sonia- and I'm not very good at being open about a lot of things but since everyone I've found here is so inviting, why not give it a shot? My best friend Melody developed alopecia in March of this year. At first I didn't really understand, you know- it was kind of a joke for a while that it was happening because we both dyed our hair so much. Let's see... when she told me about it, she didn't really explain much but it still didn't change my opinion of her. I just knew that this would be rough for her, and that I needed to be there. Honestly, I don't really care what she looks like because she is beautiful to me in every way possible. She also has a very awesome and loving boyfriend who (quoting her) tells her that her bald head is sexy, haha. We also met with Debbi Fuller from Fuller Hair not too long ago and it was a really enlightening experience. I really would like to learn more about alopecia, and what I can do to be there for her, as well as many others. This community has opened up my eyes a bit more to how compassionate and deep the world CAN be, and I guess I'm thanking everyone here for this opportunity.

Permalink Reply by rj, Co-founder on November 13, 2008 at 9:52am

Sonia, thank you not only for joining Alopecia World, but also for being such a great friend. You too are a living example of "how compassionate and deep the world CAN be," and we're just as appreciative to make your acquaintance. :-) The fact that you're being sensitive and responsive to Melody's needs means you're on the right track to providing the kind of support she really needs as an alopecian. Keep listening to her -- always listen as carefully as you can to her -- continue to educate yourself about her alopecia and effective coping strategies, and don't tell her things just to make her feel good, but because they're good and helpful things an honest and faithful friend would say to someone for whom they desire the very best. Stay positive, be practical, and keep it all in perspective, and you'll always be a friend like no other. :-)

Permalink Reply by Lyndsey on November 13, 2008 at 12:08pm

Hello everyone... I'm Amanda. I'm in the same boat as many of you here. Our 8 yo daughter is experiencing alopecia and we are awaiting test results to find out if it is being caused by the thyroid, lupus or if it is just truly alopeica. She is in 3rd grade and starting to experience taunts and laughter from other children though the hair loss is minimal and limited to the top of her head. I'm just looking to find the best way to support her through this ordeal while we await the final diagnosis. Listening to what she experiences at school on a daily basis makes me wonder why more people don't explain to their children that God made us all different, but beautiful, and to accept one another for who they are, not for what they have or what they are lacking?

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