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Comment by Linda on July 27, 2012 at 6:19pm

Hi.I haven't been here for awhile.Dealing with my Alopecia Areata and Fibrocystic Breast Disease.I'm looking at bi-lateral breast tissue removal.So my AA isn't the worse thing to happen to me.But I'm lucky in the fact that not all of my hair is gone yet.I can do comb-overs with hair-spray or clips to hold my hair in place.But I can say this...Don't sweat the small stuff.It could be alot worse for your son.Look at me for example.Love him,be there for him and don't treat him differently.He is who he is and that will never change.Have fun with his AU.My youngest son and I have fun with my AA.He shaved his head just for me, to show his support and that I wasn't alone.Now thats love people.True and real love.Take care.

Comment by Jill Alex on July 27, 2012 at 12:56pm

Reading this brings me right back to March of this year. You're strength will be what he needs, and it sounds like you're giving him that! I started a blog about what it's been like for me, check it out if you ever need validation for being sad someways because it is OK!!!! I'm trying to learn that myself : )

Www.itsnotjusthair.blogspot.com

Comment by Laina on July 27, 2012 at 12:35pm

I'm someone who suffers from alopecia and vitiligo and I had it all throughout my school years. Coming from someone who dealt with a various number of insecurities, my "only" advice to you and all the other parents out there. Get together with the schools in your area and EDUCATE, a famous basketball player has AU, and many other well known people have dealt with other forms of alopecia (Brittany Spears). Do a slide show and present it to everyone, once the curiosity and questions are answered, kids will stop wondering and being ignorant, they will realize him/her is just like them. Get pictures of black, white, oriental, freckles, red heads, bald, indian.... Unfortanetly I waited to do this presentation my senior year, I received awards and many applause,,, but the most important thing I received was CONFIDENCE=priceless . That is the best advice I could give,,, if only I could go back and do things over. Embrace the uniqueness, and know that once your kids feel like everyone else,, they will be ok. xoxo sent your way !!!!

Comment by Willem Laurie on July 27, 2012 at 11:34am

Hi jordans mom, you have a great story which is very similar to mine. I lost all the hair on my body in grade 10, thats right, my second year if high school. I'll admit, it was very tough for me at first. I was wearing a hat most of the first couple months and that is when i got the most comments on it. Then after christmas break came around, i returned to school accepting what i had, and accepting that this would be me for some time to come. Once i accepted it, a lot of others did. Sure, i know i look a little different, no eyebrows or any other hair, but to people who dont know me, some dont even notice..until i tell them of coarse. The point being, you should embrace it because until that hair grows back, if it does, there is no point in being miserable about it like i was for the first few months.

Comment by Marie Picard on July 27, 2012 at 11:00am

Dear Jordan's Mum,
Reading you was so moving and so meaningful for me as it reflects also what I felt and I was going through with my daughter Emma. I am feeling much better about it now, even if this is not always easy. My daughter has always felt relatively good about it, with ups and downs of course.
Emma is almost 10 now and she has AU since Dec 09. It occurred also very suddenly and quickly.
We are French and we live in France in the Alps. My sister lives close to Ottawa and we will visit her in July or August 2013. So maybe we could meet you at that time.
In the meantime I would be more happy to share with you our personal story.
Please let me now and I could give your my personal e-mail address.
How old is your son? When did he start losing his hair?
It was also good to read the responses your received frm everyone. Good support and good pieces of advise.
All the best to you and Jordan.
Sincerely.
Marie, Emma's Mom

Comment by Jordan's Mom on July 27, 2012 at 10:44am

Thank you all for your kind words... I needed to rant about this all with people who understand.
My son is 7, his hair started to fall out days before his seventh birthday.

Comment by Kathie Nietenhoefer on July 27, 2012 at 7:18am

I completely agree with Linda! My mom did everything she could to try to pretend there was nothing wrong, made tons of promises of making everything with me right, and ultimately put me into a wig from KMart and pretended some more. I was born with Alopecia (not sure what type exactly though - my eyebrows and lashes are very sparse and I have *some* hair but it too is very sparse, short and thin). After trying to be "right" for my mother for several years, it took visiting my father in Colorado and being accepted and loved for who I AM to make me realize that I can live with alopecia - out in the open and still be treated normally. I'm now 43 and tried the wig route for working one more time just to see if it makes a difference - it doesn't. Linda definitely said what want to tell you - love your boy as he is. You and he both sound awesome and others will see that in time. If you need some inspiration to see how well everything can work out, I found this website that shows famous people with alopecia: http://www.headzup.org.uk/alopecia_stars.aspx
The site is geared specifically to teens with alopecia and their parents. I really wish I'd had something like that to look at when I was a kid. Good Luck and God Bless both you and Jordan!

Comment by linda carraway on July 27, 2012 at 6:52am

I wish I had a mother like you when I was a kid! My parents never even talked to me about it except to tell me oh your going to a Dr that's going to put you in a room and shoot radiation at your head!(45yrs ago) . You'll be surprised how wonderful people in your neighborhood can be. All theses people have wonderful advice and their life experiences are incredible. You'll do just fine " ALL YOU NEED IS LOVE" and you've got plenty to give. I just shaved at 51 and I have never felt so free! No more hiding ,it was awful growing up with no support I wish I would have done it yrs ago. I live in a small town and everyone has been great,they asked I tell and they go on with life just like me! Blessings Linda

Comment by Shannon on July 27, 2012 at 6:30am

Hi. It wasn't clear to me how old Jordan is, so I'm not sure about his school experiences, but that might be a place to start. Our school board studied a book (through multiple school sites) called Destiny's Purpose. We used it in grades 1-8. Limestone board has done work with the book this year. It has a free teacher's guide and works really well for character development in a school around accepting differences (especially alopecia). I'm a special ed teacher and I wrote the book when I wanted to share my hair loss (at 42 - surprise, surprise) with the school I work in. It has won the Public Education Award from the Canadian Dermatology Association, and it has been a real support for schools with children suffering from alopecia. If you send me a private email with your address, I'd love to send a copy to your son. It could just be something to share and read between the family, or when he's ready he could take it to school and his class could do a book study. As well our school made a video last year reaching out to the children at the NAAF conference, made them buttons with messages of hope and sent a gift to the conference. I have gone to classrooms as an author to discuss the book and alopecia. I do the character work in our school, and it is possible to change the climate and the character of a school through one child or one book! I'm heading out as we speak for a weekend get away with my family, but I'd love to hear from you and send out a book. I'm in Ontario, too. Here's our website for more info: www.ballintotasalpacas.com . Take care!

Comment by Jorja Porja on July 27, 2012 at 5:32am

Hi there, your thoughts and feelings are very normal for a parent of a child going through alopecia. I think we take it harder than the children themselves because we fret about all the bad that may come out of it (e.g bullying and ignorance) we want to protect our children from the evils in the world. When their hair falls out it's like a visual bulleton board advertising they are differet. We as parents feel powerless when our alopecia child is out in the big wide world on their own and we're not there to protect them. My daughter was only 5 and a half when her hair fell out and I thank God everyday that she was so young and inocent that she didn't know all that I knew. She is now 7 and half and her hair is mostly grown back. My main fear now is for the future in the event she experiences stress in her life that it will reocurr. Fingers crossed. Kia Kaha (Be strong) Cheers Carolyn, Lower Hutt, New Zealand.

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