Alopecia World
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Helpless
I realize that most on this page are dealing with hair loss personally. You have lost hair, sometimes for a long time, sometimes over and over again. My heart goes out to each and every one of you, and I hope and pray you are all able to accept the condition, be brave, and live a happy life. Dealing with alopecia would be very difficult.
I have not had to. I am 45 years old, I do not have alopecia, and have all of my hair. It's my daughter that has it. She is 13 and has struggled with alopecia for 5 years now. Two years ago, it developed into AU. My sweet, beautiful, kind, funny (she is still all of these things) little girl now has to deal with something I can't fully understand or fix. I can't get past it. I would endure any time, pain, cost or sacrifice if it meant I could fix this for her. She is great, and so brave and positive, that I am humbled by it.
That being said, my anger and frustration will not subside. Doctors have no answers, treatments have intermittent success, and time goes by. There are SO MANY snake oil peddlers out there, preying on the insecure. I look at old pictures of her and it is the first thing I think of. She is about to enter high school, and things will get harder for her. Kids are, by definition, immature and will target her. Her life, at a time that is already difficult, is made more so by this disorder. It consumes my thoughts. I hide it all from her, because she has remained positive and I will not let her down. I will not let her put her head in the sand and hide (actually, she won't let herself).
Sorry, I have never posted a discussion here, but I am just so sad about this, and I don't want her to see it. I pour over research and get my hopes up on certain treatments, but I fear that a cure has been "right around the corner" for decades. I wish I could give her hope related to a cure.
Replies to This Discussion
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Permalink Reply by edie1122 on
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Thank you for sharing. I also have a daughter (18) who has battled AA since age of 3. As a parent, it's so hard to be so anxious for your child yet try to be positive infront of your child. I also have AU since age 35. I often think the reason I have AU is so my children will not feel alone in this struggle and see I live my life with little disruption. I have a husband, a good job, friends. I do where a wig but don't think this is the only way to go....take her lead but lead with positivity. I've decided I don't want to expend my energies on looking for remedies for myself but do take my daugther for treatments as I know at 18, hair is important! Hoping this helps you feel less alone in your struggles. Wishing you and your daughter happy moments in between the worry.
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Permalink Reply by Proud Dad on
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Thanks for your reply. I wrote this in a moment of frustration. I am frustrated, but my daughter is awesome and my other kids are as well. We have a happy life, but, like any parent, I want to make everything ok. It does depress me and it does make me angry, but that is only part of the story.
I am proud of her because she has not let this beat her down. She sings, dances, does martial arts, swims - the alopecia does not get in her way. That is the key, right? The real tragedy - with anything a person might have to deal with - is if that thing controls how you live your life. I am thankful and humbled by her strength. I hope your daughter is in the same boat (you too, btw!).
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Permalink Reply by Emma on
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Just to add my two cents' worth...I first developed alopecia (areata) when I was 10 and so also spent a lot of my teenage life trying to hide it. Obviously, it's different with your daughter experiencing universalis as it'll be out there in the open but I feel that similar points do apply.
1. I spent many Saturdays while in secondary school getting corticosteroid injections into my scalp. I couldn't stress it more, do not let your daughter do this!! They have a lot of harmful side effects, including thinning the skin on the scalp and even if they work short-term, it's really only a temporary solution. Speaking of 'cures', I tried all the peddlars out there too...they did nothing except leave me feeling more down when they'd stop working.
2. It took me a long time to come to terms with my alopecia and to actually bare it out in the open. It sounds like your daughter is way ahead of the game here! I love that she's not letting it affect her and since the condition is a little more out in the open nowadays, I'd hope that the people who encounter her are supportive and understanding. When I was a teenager I felt like I had to hide it all the time, which let to constant anxiety. The best thing I ever did was to just reveal my natural look, without wigs or anything. And the response I got blew me away!
Sure, your daughter will experience nasty comments and stares. But honestly, if it wasn't that it'd be something else – teenage girls will find something to pick on, unfortunately. It sounds like she has the best attitude though and she'll be just fine. As long as she knows that there;s a lot more to us than hair, that we're not defined by our appearance, she can stay strong! She's so lucky to have a dad that cares so much anyway. All the best and warmest thoughts to you both. :)
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Permalink Reply by Alo-mom on
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Hello from another mother who still hurts to this day for my daughter losing her hair while in college. She is my hero and in reading your post I felt exactly like you. I became so depressed I starting seeing a therapist, lost weight, could not visit with friends, crying when I saw women with long hair and the list goes on. However, I had to get it together because now is not the time to be self absorbed but to be the support and strength for my daughter so her life would go on. Bottom line, it did go on. She has a wonderful career, amazing friends. and a wedding that is going to happen next month. He loves her for who she is. She wears an amazing human hair wig, learned how to apply cosmetics, ie: eyebrows pencil and natural looking eye lashes like a pro. IT did take time and sessions from wonderful ladies at makeup counters but she has it all together. I even went to China to learn more about the wig industry and to find the best human hair wigs possible for her. As a mother you will never get "past it", you will however learn to accept it. Michael J Fox said, "happiness comes in proportion to acceptance" and I agree with that. I am a phone support person for Indian Wells, California and you can contact me through the National Alopecia Areata Foundation or message me if you need a person to talk to. Best regards. ALO-MOM
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Hi there. I'm new to this, but not to the oh so dreaded life of Alopecia /s. I literally redeveloped Alopecia at that age upon entering high school. As a male given. I remember my mom crying her eyes out the first day I went back to school. I remember my first fight that I got in because some guy called me a cancer patient. I remember wearing a beanie for 5 years being at all times alert for who might remove it, purposely or by accident. I remember graduating, walking across the stage with my cap on top of my beanie. I remember the awful depression that I take meds for this day. I remember my shit childhood and my awful father who belittled me. HOWEVER! I remember the small amount of good friends who didn't care and helped me through suicidal moments. I remember my years of football, track, and cross country (yes in a beanie!! 19 min 5k's) with a team of people that always had my back. Hobbies such as reading video games and the outdoors. It makes sense now when I think about how much I enjoy getting out in the world on my lonesome. I remember the first day I stopped wearing that beanie. I had some weird stares, but honestly encountered way WAY less people who were intrigued by the top of my head apart from medical professionals. I fought through it all and have created a successful life out of all of it. I'm not perfect and I would barely even say "happy" but I'm damned content and proud of all of it thanks to Alopecia and how it can humble you, (I know i'm not doing that now) help you mature and become such a beautiful empathetic person. This is not about you. It's about her and she is gonna live through probable hell for awhile and in my experience alienate herself. It's the start of a mental journey into finding who you really are and with the right support and self awareness she will be great. I know I really ran off here and I had to cut myself off, but your daughter will be okay. Try the doctors, but if it's not working. Let her work it out. Stress is such a major inducer that the more you try and fail the worse it can end up (this took me almost 10 years). I'm here for any other questions and willing to provide more on my point of view. Best of luck to you and your wonderful daughter. Life is it what it is. Approach with an objective outlook and ingrain it so deep you can have a nice sense of humor about it. Much love
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