Replies to This Discussion

Permalink Reply by Carol on August 28, 2008 at 8:48pm

As much as your heart breaks for your daughter, hers breaks for yours too. You have to make sure she doesn't see how her alopecia affects you and you need to be very careful about her feelings. As much as you think you may be trying to help her, she could eventually think that your reactions were from embarassment. Make sure you keep the lines open for communication and let her know if she has anything (and I mean anything) that she wants to talk to you about that she can. I strongly suggest finding a support group though because then she can bond with other kids that feel exactly like she does and they will understand what she's going through. You will also get the support you need to learn how to cope. It's rather unfortunate that parents are often dismissed when considering support. If there's anything you'd like to talk about, feel free to message me anytime! Hope things get easier for you both! :)

Permalink Reply by kelly godfrey on August 29, 2008 at 12:31am

Thanks carol for your thoughts. I have worked very hard to not have her see how upset I am for her. If she were to be bald tomarrow, all I would see is the beautiful girls she is. Her strength is remarkable and I am so proud of her. I have told her this and we have a pact since she does not want to speak to a psychologist she must talk to me about even the littlest thing. She seems to be doing this. She is still outgoing, getting good grades, and wanting to engage with others. I have to think this is a reflection of her coping as well as can be expected. I have been talking to the dermotologist, pediatrician, and wig person to try to locate some teenagers in this area for her to meet and talk to, but it is not turning up much. I have tried to help her cope by focusing on things we can control (ie. how to wear our hair, going to a new hairstylist, diet, ruling out any other medical conditions, taking some natural suppliments, etc..) and what we cannot control (ie. hair falling out). I have tried to show her as many choices as possible so she feels she has some sense of control in a situation that is not in her control. I've also told her that I do not know where this road is going but we will do it together. I have tried to convey to her that I am anything but embarassed but the opposite proud of her. I just wish I could help her more. I want her to keep her identity and self-esteem.

Permalink Reply by Carol on August 29, 2008 at 6:55pm

Just a thought. You didn't mention anything about NAAF, did you talk to them? www.NAAF.org if you haven't. They have pen pal programs as well as a list of support groups and people in the area. It sounds like you're doing a good job though so keep it up. All you can do is support her the best way you know how. Love is a powerful thing!

Permalink Reply by kelly godfrey on August 31, 2008 at 11:21pm

thanks for the support, it means alot. I will check into NAAF as that is an avenue I have not traveled on yet.

Permalink Reply by Cheryl, Co-founder on October 1, 2008 at 11:56pm

Hi Kelly, You may also want to join the "parents with Children with Alopecia" group as well as contact the Childrens Alopecia Project, they both may be a good place for you start.