Alopecia World
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An individual doesn't get alopecia, a family does
This is my story.
My wife and I first noticed that my 5 year old daughter Akanei was shedding her hair back in December. We would see hair when sweeping up the floor, hair left on her bed and pillow, and hair in the drain when she took a bath. We didn't think anything of it, since she still had a full head of her on her head.
The next month in January we took a trip to Orlando, Florida(which was awesome btw). Akanei got carsick one day while riding in the car and my wife pulled her hair up and tied it back while she was vomiting. That was the when my wife and I first saw the extent of her hair loss, which was mainly on the back of her head above her neckline. This area is usually not visible so we were in shock. My wife immediately made an appointment with her pediatrician for when we got back to California.
After her appointment with the pediatrician, blood work, and derm appointment...she was diagnosed with AA. The dermatologist said that she was 95% sure of the diagnosis and said that we can do a biopsy to confirm it. My wife and I decided not to put our daughter through the pain of a biopsy so at that time we passed. Two months later Akanei started to lose part of one eyebrow along with continued loss of hair over her whole head. The dermatologist recommended doing the biopsy so we went ahead with it. Akanei did the biopsy with no problems, and even the doctor and nurses said that she did better than a majority of the adults that have it done.
Through February and March, the hair loss became very rapid and severe. she went from having a full head with light shedding to bald spots and thinning all over her little head. That was a very emotional time for my wife and I. I spent many nights praying over her while she was sleeping, asking God to please take this disease away from her. Many nights I would sit and cry to myself when thinking about my daughter, I mean what parent wouldn't. We do all we can to protect them but when it is something out of our hands to control we feel helpless.
The biopsy results came back and the dermatologist said that it came back negative AA. Her new diagnosis was Telogen Effluvian which is supposed to be a temporary thing. Doctor said that her hair should come back in 4-6 months. This was incredible news!
A month after this I noticed a bald spot on my chin. I didn't think twice about it, until my wife noticed a bald spot on the back of my head. Now it got me wondering, so I made an appointment with my primary doctor. He diagnosed me with AA and I decided to wait and see how it develops. Over the past month or so it has grown in size so I made a derm appointment(which is for next week, we'll see how that goes).
So what originally was good news for my Akanei, has now grown into skepticism. Did she get misdiagnosed with NOT having AA? Her hair loss has continued and now she is almost completely bald. I can now count the handful of hairs that she has left on her head. If this is TE and not AA then why has this continued and not grown back like the doctor has said?
My wife and I are going to get a second opinion on her diagnosis. We are picking up the biopsy samples from Kaiser and our good friend(Akanei's godfather) that works at Cedars Sinai Hospital will run his own tests. Hopefully this will give us some definite answers as to what her diagnosis is. In my heart I feel that she has Alopecia and not Telogen Eff. I hope and pray that I am wrong...
So whatever God has in plan for my daughter and I, I can only embrace it with open arms. I may not agree, and I'll tell him every day, but I thank him for all the blessings that he has given us.
Thanks for reading my story so far, I will keep you all updated. -Mike
"You were given this life because you are strong enough to live it."
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Comment by Debbi Fuller on May 28, 2014 at 8:55pm
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Mike, since you have AA, chances are that Akanei also does but really, the diagnosis isn't the real issue. Any type of hair loss is devastating but you and your wife will be her strength. She needs to know that she is beautiful and loved and just fine with or without hair. Don't let anyone talk you into treatments which might have side effects and aren't helpful anyway. Let her live her normal child's life and just make sure that everyone who comes into contact with her on a regular basis understands about the alopecia - no matter the cause - and that they don't treat her differently. She's not sick, she just has less hair than other people. Get help from NAAF and from CAP about how to handle her school situation. She will be fine in any case - lots of kids go through this and they become stronger and more compassionate human beings for the experience.
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Comment by Susan Beausang on May 28, 2014 at 8:59pm
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Mike - thanks for sharing your story. Hair loss at any age is devastating and frightening. I think one thing that I learned when I lost my hair, is how important the support of family and friends is. I agree with Debbi, it's important that message that she is still the same beautiful child, with or without hair be reinforced. Get support from NAAF or CAP and talk to other families that are dealing with the same issues. Hair loss can be life altering but quite often it changes us for the better. Best of luck.
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Comment by Melissa Brunner on May 28, 2014 at 9:06pm
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Our daughter's five has Alopecia Universal. She lost it all in three to six months about a year ago. We're letting her body heal on its own, by changing her diet to only real healthy food. All organic, no sugar of any kind only raw organic honey. No yeast or flour. Her eye brows and beautiful full dark lashes have come back! We soft light hair coming in pretty dense on the top of her head. The sides are still super smooth and bare. Direct sunlight is important and not to wash the head for a few hours after exposure. I juice for her and bake all her "treats" with coconut or almond flour. She's the healthiest person I know! I wish you wellness :) feel free to contact me miamimel78@yahoo.com
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Comment by alopeciatwinsmom on May 28, 2014 at 9:28pm
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I wish I couldn't relate to your story. My daughter's Alopecia has affected our whole family. I have identical twins - one with Universalis and the other with Areata (patches that come and go). It doesn't seem fair. But I will tell you that God has really used it and continues to use it in all of our lives. Here was a blog I posted when it first began to happen 2 years ago. http://melissaspoelstra.com/the-valley-of-blessing/ I keep praying for healing - but am learning lessons in the valley.... My prayers go out to you and your family!
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Comment by dianna on May 28, 2014 at 9:38pm
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it is sad to hear this storys.i feel sorry special fro the kids.i have the same problem god bless us all.
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Comment by Dena on May 28, 2014 at 10:24pm
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You can tell the love you have for your daughter and that will help her through this transition. Our journey started when my daughter was 5, she will be 8 next month, and one thing I discovered was she is much stronger than I ever imagined. I just want you to know that there are kids out there living happy normal lives with Alopecia. My daughter has tons of friends and is very active socially. I pray your situation is only temporary, but if it isn't I bet with your love and support she will be fine.
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I feel for you and your kids. My Sydney is now 20 began her journey at age 19 in her 1st semester at College. We went through it all! She cried, we hid it with scarves to the very last day we shaved the last long strands away. I have to say it is a journey but one that will make you and your family stronger. As Syd says it is a fabulous "people filter" our community, her college and complete strangers have embraced her baldness. She wrote an English paper that her professor encouraged her to get published. That she did on a whim and it just got released. It is beautiful and touching and as she says she wants it to give people hope. She has donated her books she bought with her money to local hospitals and library's and school library's hoping to make a difference. Her book is now available on Barnes and Noble. The Curse of the Fates by Sydney Olson. She went out her first time last weekend to go dancing with her friends. She was so dolled up and looked like the girl next door but with NO hair, scarf or hat. She had strangers coming up to her telling her how beautiful she was and how she radiates! All I can say is the sadness never goes away. One always hopes. Acceptance and going through the journey will make your families even stronger. Have faith. If you are in need of beautiful and comfy knitted hats please go to ETSY and look at Wishes Together. They are lovely caring people who knit your hat to fit you. Sydney loves the bamboo ones as they do not irritate her scalp they have been her saving grace in cooler months.... We live in Nebraska. Need to chat - gladly share what we have done on this journey from doctors to food to life to acceptance and knowing your hair does not define you. There will always be trials but you have a chance to help guide your babes on this journey of acceptance, strength, love and always hope at their young ages. Sydney has always said she would have rather not had hair as a child then losing it age 20. She commented the other night as she was feeling her first fuz - I don't know what I would do if I had hair again. I have forgotten what it feels like. We grow and hopefully adjust. Best wishes - this is the chance to bring up very special people who will impact many. Sydney could not get it across to a 3 year old set of twins what Alopecia is and why she has no hair. Her best answer and the kids accepted the answer beautifully. "God just didn't think I needed my hair anymore."
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Comment by Mike Cas on May 29, 2014 at 1:48am
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wow, I didn't think my first blog would get so many views and comments within the first day of posting. Thank you all for reading my story and for the insightful comments. This is really a great community of people to be a part of, and I am truly thankful for all the kind words.
Akanei has been stronger than my wife and I combined so far. It is as if we are more affected by the hair loss than she is. She acts like her regular five year old self, she still has a love/hate relationship with her younger sisters, lol. We try and give her all the love and guidance that we can through all this.
We want the correct diagnosis so that we know what to tell her on what is going on. So far all she knows is that her hair fell out, but she doesn't know why. I wanted to explain alopecia to her and why things were happening, but after the biopsy came back negative my wife didn't want me telling her something that was "supposedly" proved wrong.
I want her to understand what's going on, and I want to be truthful to her. I want her to be proud of who she is, love herself regardless of how many hairs she has on her head, and I want her to be able to tell people about her condition and make people aware of alopecia.
So I asked Akanei if it was okay if I shaved my head to be like her, and she got so excited! I want to give her all the support I can, and if it means shaving my head before my hair actually falls out then so be it. I told her that after my derm appointment it will happen, so I will be sporting my new permanent haircut in one week...
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Mike, you're a super Dad! The word alopecia just means baldness in latin so it is correct no matter the diagnosis. Usually, the kids are the strongest because on some level they realize that hair is just hair. Parents and grandparents typically freak out more. As you can see, it isn't so unusual to have this, millions of people do. The big thing is to live a happy life with OR without hair. I agree with Sydney above. I wouldn't want my hair back now. I've lived 27 years without it now (I lost it later, when I was 37 but has spots as a child) and I now only have hair when I want it! I love the hair I wear but I love having the choice to wear hair or not to! If I had my own hair, it would get dirty when I garden or do something sweaty and active. This way, I don't need to bother if I don't want to and I only have to wash it once a week instead of every day! I'll never go grey either. I know it's different for a child, but at her age, she is confident and doesn't feel it the way you do. Encourage her independence and just being herself. Later, if she chooses to opt for some sort of hair she will do it as a free choice. For now, I'd just let her be herself and support her like you already are doing!
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It is so good Mike that you really understand how Alopecia & other hair loss conditions cann really affect the spirit/essence of a family.and its great you are so supportive of Akanei.
I was blessed that my mother has been very understanding & supportive with regard to my rare form of alopecia. She has spent so much money on my wigs wig alterations etc over the past 4 years and told me who you are is far more important than your hair. Have you considered getting Akanei child wigs ? Due to my rare dwarfism I have a child size head
and have bought kids wigs as well as adult wigs,the latter of which always need alteration and dermafix to keep them secure on my head. You might possibly want to show her kids wigs
like online photos and encourage her not to be afraid,as these are ''special hair'' and I hope her friemds and their fanilies are also supportive of her hairloss situation.
-Marsha
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