Hi Paula and Ray,

Welcome to Alopecia World

Welcome.

Roger.

Welcome, this is a great site for parent support!

Karen

Did you son just develop Alopecia or has he had it awhile now?

Hello and welcome, Paula and Ray! How are you guys doing today?
LeslieAnn

Hi Paula, I wanted to take this opportunity to welcome you to Alopecia World. I have been living with Alopecia Areata since 1991 and know full well the struggle it can be. I look forward to getting to know you. Cheryl, Co-founder

Wow, we have the same last name. Glad to get a comment from you. I am new to Alopecia World. I have Alopecia. I have gotten an overwhelming amount of comments since I joined Alopecia World. I am happy about it, too. When I get my full-lace wig, I will post some pics. Hope to continue talking.

Hi Paula,
My son is 8 and also has alopecia. He has had it since kindergarten. Your son is beautiful and looks so happy. How long has he had alopecia?

Thanks,
Alece

Hi Paula, I am Cindy and my 7 yr old daughter has been living with Alopeica for almost 2 yrs. This site is great. Ray is a handsome young man.Sam is having regrowth with treatment and is quite a resilient young gal. How is your son? take care,Cindy

Hi Paula, Ray is handsome no matte what. But, as a parent I know what you mean. We have our good and bad days as a parent, but in the end it is our kids outlook that matters. And if Sam is happy then I am happy. How long has Ray had AA? We have yet to go to a conference, but you can do a few things: You can contact NAAF and they run a big conference every year that I hear is fabulous. They focus alot on research and talk about it and have a kids camp that is supposed to be fun. The other thing I suggest is contacting the Childrens Alopeica Project. www.childrensalopeciaproject.org. This organization is based out of PA and they focus all of their efforts on building kids self esteem and acceptance. In Aug CAP is holding their first kids conference Aug 7-9 in PA. We will be there. You can also contact CAP and get on their contact list and they can see if there are any children registered with them in your area to connect you with. Next month, I am started CAP meeting in my area. I have yet to meet or speak to Betsy or Jeff who founded CAP, but I hear they are great people. I suggest checking it out.
Hope this info helps..Cindy

Hi Paula and Ray! It's nice to meet you both. Thanks for sharing your story. Ray is a handsome young man & so glad he's gotten to a point where he doesn't mind that he doesn't have hair. Kendall has been wearing her hat less and less at school lately her teachers informed me last week. They are even noticing the growth we've been noticing for months, so it's nice that there's enough growth that others can now notice. I noticed Cindy's mssg. & I just received my info from CAP, so I hope you are able to join too. They seem to be such a great org. focusing on the self esteem of young one's.
I'm looking forward to getting to know you and Ray!

Kimberly

Yes Paula I will be attending the CAP conference. I have already booked my room so I suggested doing it soon...How does Ray get along with his peers at school. Just wondering if he has any issues with peers.cindy

Oh, I got a laugh at his theory on later in life..Do you have the information for the CAP event in Aug? You can contact them for it if not or I think you can find it somewhere on this site. Samantha has a few penpals her age from this site and it has been a great experience for her. I think it may help Ray to find a penpal, maybe a boy his age that he can relate to. Of course Sam is happy to write to hm, but there are many boys his age on here too..

Hey Bowman Family. I'm so glad you found us. I hope we can swap stories. I hope you have a fabulous day and talk soon.

Brittany and the Bullard Crew

My dad's name is Ray too!!!!

Paula,
Just saw your pictures. You have a beautiful family and Ray is such a handsome little boy. He looks very happy. How does he do with handling his alopecia?

Thank you Paula for the very nice comments. Ray is one cute kid! I don't think there is anything to worry about there. We have absolutely no problems with Ella having Alopecia and I really credit to the fact that we don't care if she has no hair. She certainly doesn't care that she has no hair and she rarely wears hats. I see that you are talking with Cindy about the Alopeciapalooza. We are planning on going and would love to meet you both!

Paula, I saw your post on Kimberly's board about CAP. If you book a room at the hotel under the group rate you still have a window of cancellation and you only need to give a cc to hold the room. Something to consider if you want to ensure you get a room at the hotel that is hosting the event. You can contact CAP for the info. Hopefully, we will see you there!Cindy

In response to your question, the only thing that the ped. derm. has prescribed for Genevieve is Clobex. We haven't tried it though. All the warnings make me too nervous. I don't want to cause a problem for her adrenal system or pituitary glands later down the line because of a few bald spots now. Right now I guess we are just putting it in Gods hands and we will just have to go from there.

Hello Paula, First of all I think Ray is a handsome young man, Savanna thinks he is awfully cute too...It is always good to hear when their is a child who has enough courage to show off their beautiful heads. He seems like he is well adjusted and it is good that his older sister treats him good and all her friends accept the way he is. I have a son who is 11yrs old and in 6th grade and all his friends treat Savanna pretty good. No one treats her diffrent, but since she has gotten her first wig back in Sept. she doesnt go anywhere without and she always wears it.

I notice you lived in Dublin Va. I believe that is some what close to us...maybe an hour or two. Maria

Paula, Yes I would love for savanna and Ray to meet, I think that would be awsome, then maybe they could become penpals too, if he like that kind of stuff...Maybe we could get together sometime this summer when it is nice and warm...I would love it, just to meet someone else who has alopecia, but i will ask savanna and see what she thinks about it....Maria

Hi Paula, Thanks for the message. Sam just had her 7th bay this week and we were in Disney..Needless to say I am in recovery mode now. We see her dr on Tues, but she is doing well. Thanks for asking..I see you have connected with Maria. That is great if you guys meet up sometime. In March, I am starting CAP meeting in Mass.I am really looking forward to it...Anything new by you?

CAP stands for Childrens Alopeica Project. I am starting a kids support group in my area under this organization. We will do fun activities for the kids and families and it is means of connecting with other families in this area. CAP is trying to expand their support groups for the kids by having families become group leaders and start meeting. I have a back ground in education and decided to do this. There are no groups out here for kids and when we started going through this I could not find anyone to talk to or anyone for Sam to meet. Now, we will have both. Last month, I organized with another person a lunch in Boston. We had adults and children with AA get together and we had a great time. I hope Ray and Savanna get to meet. Samantha and Savanna have been pen pals for the last few months. We are definitely going to CAP Conference in Aug. Did you decide to book a room?

Paula, I got the info on the CAP Alopeicapalooza. Did you get it? If not, contact CAP so you can get all the info on it..

The hotel is Sheraton Society, Philadeplhia, PA 215-238-6000, Aug 7-9..Betsy sent out an emailed brochure of the event. If you want me to foward it to you send me your email address.

I have never gone to one of their events, but I think Ray can be rest assured it won't be like school..I believe alot of it is kid orientated. My husband is going to be going to that hotel on business in two weeks and sam and i are going with him. He is such a baby about traveling long distances by car alone. We will be staying in the same hotel as the CAP conference. I will scope out the place for ya..HEHEHE...Hope you make it. Keep in touch..

i feel really bad for your son. it most be hard to have alopecia for 6 years! ive only had it for 3 years!

Thank You, Paula...