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Teenage daughter has alopecia areata

Discussion in 'Tell Your Story' started by Josie's mom, Oct 19, 2012.

  1. Josie's mom

    Josie's mom Guest

    Hi...my name Julie and my 14 yr old daughter has alopecia areata. When she was 3 we found 3 small bald spots...doctor said to monitor and report back if things got worse. Hair grew back, he figured it was a freak random reaction, we forgot about it. She was a very healthy, beautiful little doll. When she was 12...I noticed a small bald spot on her crown...then another one elsewhere...and another one....she lost about 80% in about 8 months. It was awful, stressful, scary etcccccc.....at the begining we could cover up the spots with other hair...long, thick, beautiful blond hair...all over the floor til we couldn't hide the spots. She refused injections, so we bought a hair topper, then another one when this one started to loose too much hair and look awful... We learned that these things cost a fortune and don't last that long on an active teen. Her hair finally grew back in, she was able to start high school this year with her real hair, shaggy shoulder shortish look but she looks so sweet it was fine...til, last week....spots...2 huge ones a a small one. We wanted to cry, scream, hide under the covers, ignore...yeah, I think this is where we are now...trying to hope that it won't get worse this time....
    Oouuufff this is some roller coaster emotional ride. Luckily she is such a sweet soul with an amazing positive outlook on life, she amazes me! Not to say she hasn't had many a fit over her hair or those hairpieces.
    She didn't want to tell everyone. Her 2 best girlfriends know, close family and she told her boyfriend that she's been steady with for the last year. He said he knew something was off about her hair but didn't want to pry. They have been amazing supports for her. She quit swimming, a sport she had loved all her life, she became more withdrawn during the worst times, she is naturally bubbly and has an easy smile.
    I hope with all my heart that this isn't the begining of a real bad episode like last time, or an ever worse one...but I know it could be. This disease is so difficult because we can't predict or controle what happens...
    So that's my story, a mom who's hearts breaking for her beautiful teenage daughter...
     
  2. Joann

    Joann Moderator

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    Welcome Julie. I'm sorry to hear of your daughter's bouts of Alopecia Areata. I don't have exactly the same Alopecia Areata story but I also started losing hair to Alopecia Areata at 4 years of age. It became severe almost totalis but by 6 my hair had regrown. It did continue to flare up as bald patches after that but no severe loss until my late teens. I recovered from severe loss again & then had about 20 years of remission until again a patch appeared . I have been bald these last 11 years.

    Alopecia Areata is certainly is a roller coaster ride with all it's highs and lows. The unpredictability of when Alopecia Areata will start or stop or how bad it will get is very difficult for everyone whose life is touched by it as well as their loved ones.

    Your daughter sounds like she copes quite well . Everyone with this condition does have days when it gets to them. it's to be expected and we all have them. I'm glad to hear that your daughter's is making her own decisions about treatments and who she wants to tell.who to tell. It's great too that she has a good support system in her family, girlfriends & boyfriend.

    I sorry that she quit swimming. There are cyber hair wigs that you can swim in. You may want to consider them .They are made by a company called Amy's Presence. There are also some neat swimming hats by Nammu you might want to have a look at too :http://nammuhats.com

    Please feel free to ask any and all questions you may have and remember to never lose hope.

    Hugs to you and your daughter,
    Joann

    - - - Updated - - -

    Julie, I forgot to give you this link to the National Alopecia Areata Foundation. It's a great resource for help and support too.

    www.naaf.org

    Joann
     
  3. Josie's mom

    Josie's mom Guest

    Thank you Joan, I appreciate your response. And I love the quote on the bottom of your picture ;)
     
  4. dancer

    dancer Experienced Member

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    Hi Julie

    My heart goes out to you and your daughter as I too was 12 when I became Alopecia Universalis. From reading your post you have a similar approch to my parents, they gave me total control of treatments and who I told, from talking to my Mum now she found it difficult at times to accept some of the decisions I made but they never forced their views on me, for that I have always been grateful and have great respect for them as that couldnt have been easy. Their wonderful support and constent reassurance that I could do anything I chose helped me through. Yes there are really bad times and times when you seem to just be able to cope. I remember withdrawing into myself a lot at the beginning, for me, it was my healing time, time to reflect and deal with the emotions I was feeling. I think you are doing a wonderful job and it is great she has support from her bestfriends and boyfriend.

    I really hope this recent bout of Alopecia Areata resolves itself quickly. For future reference which I hope you dont need there are lots of lovely women here with experience of toppers that havent cost a fortune.

    Big hugs my fingers are crossed for you
    Sara
     
  5. Josie's mom

    Josie's mom Guest

    Thank you for your reply Dancer...and I also thank you for the reassurance. I try to be there for her as a support, to hold her up when she's down...I research and tell her HER options and let her choose. I wish that I could take this away from her....I would gladly loose all of my hair if it would mean getting hers back ...it is difficult sometimes because I don't want to make this about me, it's hers. This is extremely stressful so if I give in to stress I won't be able to support her...but hmmmp I don't always do a great job. I admire all of you for your strenghth and thank you for sharing your stories, insights and experiences, it is very helpful.
     
  6. dancer

    dancer Experienced Member

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    My mum uttered those words too. As a mum I fully appreciate how difficult this can be for parents we want to protect our kids. Look after yourself too, there are some lovely supportive ladies who are more than willing to give support, even if its just a post to vent, it can help :)
     
  7. Hanna H

    Hanna H Guest

    Hi, I feel your pain. My daughter had her first episode as a freshman in highschool. We did cortisone injections and it all grew back. It came back with a vengence her senior year in highschool. She went Alopecia Universalis in a short time. We did shots again and they did not work. We tried sulfasalazine and she got some hair back but had to stop due to a reaction. We bought all lace wigs which she tapes on with supertape. She wakeboards and swims in these. She also continued to cheer. She is away at college and I am always looking for the best options for her but she is a happy well adjusted girl. I spend hours looking for answers so that she doesn't have to. She just wants to be young and carefree right now. Let me know if I can help.
     
  8. cbradley425

    cbradley425 Guest

    Josie's mom - I don't know what your daughter is going through. I'm 24 and losing my hair. Still young, but not as young as her. There is more to life... way, way more. And your beautiful daughter will find a way, as will you. Your daughter will be strong, as will you. Know that you have a place here to vent anytime! And you are not alone!
     
  9. Taybug98

    Taybug98 Guest

    I started losing my hair at 11 years old. It went away quickly, But then towards the end of 7th grade it came back again. This was a rough path. After battling it that year I was finally spot free. For 3 months. Then i started noticing that I was shedding more and more every day. Until I noticed a spot. They just kept coming and coming. I found my fourth last week. I have been getting injections which I hope is helping because that is what worked the last time. I just started my freshman year, and am also 14. I know what your daughter is going through and it is no fun :( She has definitely been braver than I have. I have not told any of my friends. I'm just too afraid no one will accept me.
     
  10. Josie's mom

    Josie's mom Guest

    Thanks for your replies and support...even if family and friends support us there is absolutely no way of knowing how utterly frustrating this is!!! I love your attitude cbradley and we are thriving to maintain ours as well because yes we are two very resilient gals :eek: and Hanna the being able to feel carefree is exactly what I would love for her right now...we didn't get that with the clip in toppers we used...first of all the clips hurt her head and she couldn't swim in it and it didn't feel secure on her head. She is very active...softball, soccer, she has a horse and must wear a helmet to ride (BTW we bought her horse in the worse of this and it helped her cope sooo much...she had been riding for years. Now she works at the barn week-ends to pay board, she loves it there and it has helped her soul :) )...

    If more spots continue to appear, she may need something else soon but I would like something different from a topper...don't know what though...lace wig with tape sounds perfect from what you describe Hanna but she doesn't want to shave her hair...and she has a small little head and face, I am scarred a full wig with hair would look too big for her? ...I read about hotheads hairwear, hair parts and fills, they look great and no need to shave, I called their company today and they only sell retail to salons and you need a course!!! ooofff sorry for the long hair stuff venting...It is very difficult to find what's right...and I really have to wait a bit more to see how it will go this time in case it doesn't get worse then she won't need anything but I need to be ready if it does :( I will continue to read the great info on this site about wigs n'stuff to help me find something better and I will post my questions there later.

    And Taybug...I think you are extra super brave to be on this site and talking of your experiences...!!!! And believe me I know about 14...hmmm, she chose to tell those closest to her because they saw a huge spot in back of her head at a sleep over and her boyfriend has a pool and she kept saying she couldn't go swimming ... like there was no way she could make him believe she had her period all the time lolll...It was a good choice for her because they were great. I understand that before telling anyone you need to make sure you trust them enough that they will support and accept you.
    I work hard on encouraging my daughter to love the great things about herself and feel good about that...her love and gentleness with animals, her compassion and kindness towards other people, her weird funny sense of humour...you see, all things that are non physical because in the end that is what really counts and if you KNOW how beautiful you are inside, then you'll be also able to look in the mirror and see how beautiful you are regardless of your hair!! I dare you to make a list of everything that's great about you and I'm sure you'll be amazed...and yeah, I know, easy for me to say...she tells me this but still smiles anyway :)
     
  11. Izzy-

    Izzy- Guest

    Hi I'm 14 and was diagnosed with Alopecia Areata when I was 8,I find it really hard to cover the bald patches I'm worried that people will see them and say something.but I have a boyfriend that I've been with for nearly a year and I trust him lots but I'm worried that if I tell him he will no longer want to be with me what shall I do?
     
  12. Jemsgirl

    Jemsgirl Established Member

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    Jumping in without reading all the comments. Sorry
    I do not know much about Alopecia Areata, but I've come across some things. First, I read a news article a few months ago about a cure for Alopecia Areata. I'm not sure if this is a related article. I quickly searched just now.
    http://www.medicalnewstoday.com/articles/281148.php
    Also I have read of women with Alopecia Areata that have cured their condition with a "caveman"- like diet (paleo/gluten free).
    I'm so sorry your daughter is going through this. I'm sure you are desperate to take the pain away. Big Hugs :)
     
  13. Lin Gao

    Lin Gao New Member

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    Hello, I am Lin. My daughter just lost all scalp hair in four months and is losing eyebrow and other parts of hair. She got two scalp steroid injections and lost all hairs after second injection. I am desperate and can not bring myself out of depression and anxiety. Fortunately, my daughter is accepting her condition much better than I can. She has good support from her friends and dance teammates. Thanks to Julie to share your journey with your daughter which has helped me. I hope that I can graduately walk out of shadow. It is also very comforting to read everybody's comments and kind words.
     

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