Replies to This Discussion

Permalink Reply by NettyNurse on October 8, 2013 at 10:52pm

Hello! I'm so sorry to hear what your family is going through. It's tough, but if you stick together you will get through this. I was diagnosed with Alopecia at the age of 4, my parents were desperate to find a cure to my condition, I went through every medication and treatment in the book and nothing worked. By the age of 6, all my hair fell off, and I was left with no choice but to wear hats and berets to school. I was extremely self conscious and would cry a puddle of tears each time a kid would pick on me or ask me questions about my hair. As I got older, it did not get easier, I had to wear wigs going into middle school and high school, and the teasing got worse. My parents hated that this was happening to me and switched schools numerous times to end what I was going through. It was a tough road, but I got through it all.
I'm now 27 years old, Throughout my life my parents helped me to understand that sometimes people are not going to understand what I have, and that it is up to people like me to help others understand and educate them. Help your daughter see her inner beauty, and teach her that hair is just an accessory to our lives. When she gets older she can find wigs that suit her nicely if she likes, one advantage is that we can always change our hairstyles! :) Help her stay strong, and teach her how to appropriately respond to people that ask her questions, it'll help boost her confidence. I've learned that the more comfortable I was with my condition, the easier it was to cope with difficult conversations with people.
I wish you and your family the best! Feel free to message me if I can help you with anything!

xoxo

Shenette

Permalink Reply by Gumi on October 9, 2013 at 6:53pm

Shenette! Thank you so much for your warm and kind reply. I'm sorry you've been through a lot. but I hope my daughter will be like you when she gets to your age. I don't like people stare at her. For example,when we are outside of our house and if someone pass by,I'd tell her to go inside the house. When we are at store and if we happen to see someone we know I'll go the other way. I am terrible mother.
I should not hide her but I just hate people look at her and even I try to explain to them,none of them wouldn't understand. They would say,"oh,she is stressing out!" yes,stress triggers alopecia but that's not all. some people has it when they are just baby. everybody,we all get stress here and there so we all should get alopecia. I am sorry to complain to you. You are a lot younger than me and I'm so immature. I just wish this will stop and I know it won't. it repeats. My mother would tell me, so many parents out there have child has cancer but my daughter is not dying so I should be happy. Yes,I am greatful but you know what I feel. I need to stop complaining,ha,ha,ha. So Shenette, do you have anyone in your family has alopecia? My mother-in-law has it but she never lost all her hair. She has 4 children and non of them got alopecia and unfortunately pass on to grandkid. I just wish and hope alopecia will be cure disease in near future. I'm sorry I'm all over but Can I send you message here and there sometimes? I want to ask you so many questions but I need to put myself together before I do that. I really appreciate you. Thank you,Shenette.

Love,Megumi

Permalink Reply by NettyNurse on October 9, 2013 at 9:16pm

Gumi! Thank you for joining my Bald and Beautiful group! What a coincidence we both live in Florida, and not too far away from each other! As a mother, your instinct is to protect your daughter, which is perfectly fine, and it does not make you a terrible mother. I recently started going out with no hair, and I still end up finding myself seeing people that normally don't see me without hair, and I just have to face them and tell them a little about me. People react because they just don't know, and once you tell them, they understand. My mother went through what you are going through and from the stories she told me, they were a little heartbreaking, because she didn't know how my childhood would turn out having Alopecia, but she was there with me every step of the way, and that helped me get through all the tough obstacles. I'm actually the only one in my family diagnosed with Alopecia, and we have not been able to trace back to anyone that has had it. Alopecia doesn't make us different, it makes us special, it's just a beautiful as having a nice smile or beautiful eyes, it all depends on how you see it. If you teach your daughter that she has nothing to hide, she will be just fine. I would love for you to message me with any concerns you have, I'm here to help. I'm on a mission to tell the world about Alopecia and everything there is to know about it. Thank you for confiding in me, it's nice knowing I've made a difference in someones life. :) You're so very welcome!

Love,
Shenette

Permalink Reply by Michjo57 on October 9, 2013 at 9:42pm

You might look into emotional healing with essential oils. When I lost my hair last year, it was a nightmare. Thank the Lord I am older, but it was still traumatic. I got into doTerra essential oils because I was a basket case and did not want to take any prescriptions. Anyway I was reading a story about a mother whose daughter was burned badly on her face when she was 2. By the time she was 5, she built up a wall to pain and her mother worried she had built up all these emotions inside her over the years. She treated her daughter with the oils and they definitely helped her release her inner emotions. She was having difficulty in school, I think is what prompted her to try the oils. I bought the book on Amazon Kindle, Emotional Healing with Essential Oils.

The other thing you might consider is checking into Locks of Love or other places that provide free custom hair pieces for children with alopecia, or going through chemo etc. I bet you could definitely get her something really nice for free. The hair pieces are usually donated human hair from children and I bet you can get one to look close to her hair.

I have read different things on this website of natural therapies for children. One was about onion juice made the hair grow back. I know, yuck, but if it works. I am currently using Cedarwood oil, Lavendar Oil and Rosemary oil on my scalp. This was presented at the doTerra essential oil convention last week as treatment for alopecia. You can purchase these online too. You might search onion juice on this website and read the posts about it. I would brush her hair/scalp a lot to try to stimulate the follicles. God Bless your family. I will pray for you all that you can find Peace with this. I finally did, but like I said I am older and thankful that it happened to me later in life. I'm definitely a believer in the oils too.

Permalink Reply by Gumi on November 24, 2013 at 6:30pm

Hello,Michele! I'm sorry I didn't see you made a comment here! Thank you so much. So doTerra works for you? You got your hair back? At night, I put biotin oil on her scalp and pure rosemary oil in the morning. We also just changed her diet to gluten/ dairy free. She is allergic to wheat but my daughter never complain stomach pain. Still,I'm hoping healthier diet will help. I'm proud of her she is such a strong girl. I'm learning so much from her. Please let me know how long you've been using doTerra and how are you doing. Thank you so much for your prayer. It means a lot!

Permalink Reply by Michjo57 on December 21, 2013 at 9:48am

Hi it's been awhile since I have been on the website.  I have been using the oils and I have noticed the hair I do have is coming in thicker.  However, the hairless areas I think are scarred over, so I don't know if it will work.  I will continue to use the oils.  You have to be consistent, it may take a month or year before you see anything, but I'm going to give it a shot.  Did you check out locks of love to get a custom hair unit? Just curious. God Bless you and I wish you all Peace with this.

Permalink Reply by Dame on December 21, 2013 at 2:26pm

I to was diagnosed with Alopecia at the age of 4, however I have areata. My parents were more devastated than I was, especially my father. However, my parents hid a lot of that from me as well as my brother.  They didn't treat me different at home and my mom would help style my hair in the mornings before school.  As I got older I had various periods of regrowth and fall out sometimes falling out more than previous times.  Each time we would find new ways to style my hair, my parents didn't force treatment on me until I asked for it which was probably around 8-9.  Then we started things like Rogain and eventually shots.  None worked and when I asked to stop my parents understood.  

Fast forward 23 years and I now wear a wig (for the last 6 years).  There is no easy answer and as a mom myself I understand wanting to do everything possible to help your child, the only advice I have is to have her take the lead.  While I truly hope she does not have this for the rest of her life, there is a chance she will and having her learn her way of coping and deciding what she wants to tell people, how she wants to hide it etc. will help her. Keep open communication but keep back just a touch and wait for her to come to you and your husband.  As hard as that may be, my parents doing that enabled me early on to determine how I wanted to deal with it since I was the one who had to live with it.  It's a new adjustment for her and in some ways it will get easier and other ways much harder as she ages, but the way she learns to cope now will prove fundamental for her in the future. 

Permalink Reply by MtnGirl on January 28, 2014 at 9:33pm

I was diagnosed at 7 years old. My great grandmother had Alopecia and lost all her hair. It is genetic and it runs in families. I was told that it skips a generation. It is an autoimmune disease and it causes our bodies to attack the hair follicles. Yes, stress might trigger it, but it is not the only cause. I had a happy,care-free childhood. I think if I had stress, it was due to the Alopecia.

I had small patches at first, then lost hair at the nape of the neck and then around both of my ears. Through cortisone shots, cortisone creams, the hair around my ears came back. It was a constant thing of new patches, then re-growth and then new patches. The area at the nape of my neck never came back. I had an aunt that was a hairdresser and we were able to find partial pieces to integrate with my hair when needed or styling it a certain way during my episodes. Most of my friends never knew. I was lucky. I was able to go swimming and do the things I wanted. I didn't let it stop me from being a kid or living my life. I was very self conscious though and hairspray was my best friend. Growing up in the 80's,where teased hair and hairspray were the style- I was lucky to be able to hide it well.

However, when I was pregnant with my children my hair came back and it was good and almost normal for two and half years. I had my children 23 months apart. I guess the chemistry of our body changes so much during pregnancy. However, after that, the cycle started again. I eventually lost 75-80% of my hair and have been wearing wigs and weaves for the past 9 years. There are times, though few that I get down and it is difficult when people stare. But it is few and far between. I think most of the time that there are other things bothering me and I just bring my alopecia into my pity party. I learned a lot on the way in buying wigs and such. I get compliments all the time on my hair and I smile, because they do not know it isn't mine. I even enjoy choosing a new hairstyle (length or color) every few months, if I feel like it. I can have curly hair, straight hair or anywhere in between. I also make sure that it is good quality human hair, so I have the option of styling it with hot rollers, curling iron, etc. I also love that I can get ready faster many mornings because of my weave or wigs.

I have been happily married to a wonderful man for 20 years, who loves me for who I am and thinks that I am beautiful. I was just reminded the other day how lucky I truly am, when I talked to a high school friend of mine with severe, debilitating rheumatoid arthritis. She has been undergoing surgeries for the past 4 years to replace joints and bones that have deteriorated. She has suffered with this disease since high school. I have an autoimmune disease, but there are many worse autoimmune diseases like arthritis, Lupus, and many more. I am thankful that I can purchase a wig or get a weave and fix it. It is not easy, but it gets easier.

For those that don't get it and are rude, I say forget them. Like Marilyn Monroe said, " If you can't handle me at my worse, you sure as heck don't deserve me at my best." (This is a partial quote, but I use it to remind myself that not everyone deserves to be given weight/importance/value in my live.) If they are mean, rude or insensitive to me, I move on. Life is too short.

Permalink Reply by Moni on February 3, 2014 at 1:10pm

Hello. I hear you with what you're saying. I have cried so much since all this began for me when my daughter was 2 yrs. old. Now she's 9 and last Sept. lost ALL of her hair (again). When she was 4 we didn't do the steroids and she lost all her hair, things grew back. Whenever shedding will start (which was probl. annually) we'd give her Prednisone (steroids). This last time, we went to a new doctor (Dr. Richard Strick who does a treatment with allergens) and he told us to stop steroids ASAP. So, my baby is completely bald. It freaking SUCKS. I too DESPISE the stares. I know it's going to happen becuause it's rare but people can be rude cause they could smile and most times they don't. Kids are worse because they are curious and don't know better, I guess. My daughter refused to wear beenies, hats, wigs, etc. Just this past week she started wearing a wig when we go out in public. She has not been in school the entire month of January. Today she said she was going back (with the wig because she noticed the stares are gone) but became anxious and didn't go. She's here, sitting with her wig. I'm taking her to therapy and the lady is real helpful. Heaven sent. She suggested we focus on other things she's good at, like playing guitar, singing, mine craft, other than just hair. It's hard. I have alot of faith in God and encourage you to seek Him. You and your husband are great parents because we protect them as best we can. There isn't a book of life that said to us, "Your kid will have this and this is the way your life will be!" Nope. Be strong, stay focused on helping her psychologically. Our kids WILL overcome and be who they are because we have an awesome God. I am desperate too and I hate the whole entire thing of all these steps. Hang on. Don't let go.

Permalink Reply by Rose Marie' on February 7, 2014 at 6:58pm

Hi

I'm a Mum, my daughter has alopecia.  She was diagnosed when she was 12 years old, she is now 23 and alopecia still impacts her life (not necessarily in a negative way....but it has it's challenges).  I have also had the fortunate circumstance to be in contact with many dealing with alopecia and what I have noticed there is no right or wrong way, just the way that suits you, your family and your daughter.

I personally took a very long time to shave the last of my daughters hair off and it was only done once major and continuous communication took place.  For me that is the key to supporting and being supported.  Your daughter is very little and she needs you to make decisions for her and with her....don't leave it up to her (but obviously include her).  At her age she has no life experience and really lives hour by hour, minute by minute.  As an adult you have the foresight and the love to do your very best for her.  My biggest priority for my daughter was to make her safe no matter what environment she was in.  Making sure that school and people effecting her life were well educated on what she needed.  I had a zero tolerance for bullying (and still do).....I don't really care if someone is different there is absolutely not need to tough that stuff out....it hurts the victim and the perpetrator.  So, don't leave her out there on her own trying to cope.You have the skills to work this out for you all....she so needs help.

You are obviously are great mum....you are here working out what will work best for you all.  If I can help in any way feel free to contact me. Also, be assured you and your daughter are going to work this out and it will be ok.  

Rosy