Alopecia World
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But it does define me
I am in the 9th grade and I was diagnosed with alopecia universalis. I got it when I was in the 5th grade when my strands of hair that i thought where just split ends. 7th grade was when it really started to come out in patches until around 8th grade it was all out and I was completely bald. Not only did my hair fall out on my head but I have hairless parts on my arms and legs. I have no eyebrows and I have to draw them on. My eyelashes have recently started coming out and i dont know what to do. Im a teenage girl and how society is one of the things that is so important to me is being taken away. I had long thick black hair its so hard to look in the mirror because I feel so ugly. Its easy to say things like dont let alopecia define you but it does. It affects how you feel about yourself. It is so hard going to school constantly being asked if my hair was a wig and people asking to touch it. In my 7th grade year I once got chased down the hall to my next class because 2 boys where trying to pull it. It has been hard and I cant get out of this dark hole. I try to smile and be happy but it just is not working. I want to feel pretty I want to be confident but I just cant. Im so sad and I just dont know what to do. Like im still a child I shouldnt have to be worrying about this im supposed to be worrying about school and education and friends not hair loss. im completely bald and I feel like im drowning.
Replies to This Discussion
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Permalink Reply by Emilee Dowson on
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Hi beautiful, I'm going into grade 12 and I've have it since I was in grade 4. I would love to talk to you. I've been through the exact same stuff and believe me I know how hard it can be. But I would love to be here for you as someone to talk to. I think I might be able to help.
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Thank you so much sorry for the late reply i didnt know that people where going to be there and support me and know exactly what im going through. But thank you so much
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Yale had a medical breakthrough that could potentially change this for u but it may take some time for them to test the medication or for them to develop it so it is an appropriate dosage for your age. On the brightside this could happen for u at a much earlier age than me, as I am 36. Chin up and check this out: www.News.yale.edu
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Permalink Reply by Littlebb on
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I totally understand your story, my daughter has the same problem. If Have you ever heard of "Lock of Love". This is a non-profit organization in Florida US that helps kids with Alopecia. You can get custome vacum sealed hair pieces.... very amazing.
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The guy they tested it on had universalis for 7 years and regrew all over his body in I think 8 mos. This is Yale, not some scam website. Be careful of those, lots of websites will try to tell u they have a cure for sure, and they dont. This is the first one that I have come across that gives me hope, however, and I submitted my dna for national research and the doctor in the article that is mentioned is actually the lady that the doctor from yale said was the reason he tried tbis treatment. Like I said tho, talk to your parents and let them help u. They can see for themselves what they think. Good luck. I feel for u since I have dealt with this off and on for 20 years.
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Here is the website
http://www.locksoflove.org
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Thank you so much I will definitely check this out
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Permalink Reply by Dena on
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I am so sorry you are going through this at your age. High School is hard for most kids and I am sure going through Alopecia in high school only makes it that much harder. I can only say that if you can hang in there, life does improve after high school. You will still encounter jerks, but at least you will have more freedom to chose your environment. I had a friend with Alopecia in high school that basically hid the entire 4 years. I saw her in college and she was a totally different person. When you get around a wider variety of people it isn't as big a thing. As far as Alopecia defining you, I don't see how it can't change you but that isn't necessarily a bad thing. Talking with people with Alopecia I have found some of the most courageous, caring, sensitive, empathetic people. Going through something big can't help but define you. It definitely changes how you see things. I will agree with you that it does suck always being asked questions. Sometimes life seems like it would be easier if we could stay anonymous, but how boring would that be to be invisible. Beauty comes in many different forms. Being unique doesn't make you less beautiful. I understand that is harder to see when you are in high school and wanting to fit in. I hope you can learn to see that beauty in you, because I bet it is there.
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Peggy Knight Soutions is also great, but they are for profit, you may already know. I wish you all the best.
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Permalink Reply by RJ Martinez on
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OK YOUNG MAN- I was the same age when I got this- and your gonna have to learn to be strong- nothing in this world will be easy and this will DEFINE you- a STRONG PERSON- I am now 45 and still trying DAY BY DAY even in the divers world as this one we live in. I GOT TIRED of all the names- to my face behind my back and under breathes- but NOW I'm a better person--- you can relay any concerns you have about anything.. and ILL do my best- for you..
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Permalink Reply by Layzeebabe on
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You mean young lady :)
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Permalink Reply by basilica on
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You are breaking my heart and I completely relate to so much of what you've shared with us. Your very brave. It just isn't fair, I'm so sorry for your loss and mine as well. I was diagnosed when I was seventeen and I was so furious. It was a defense mechanism I suppose allowing me to muster the fight it would take to get on with living after such a blow. I have universals now but my disorder seems to cycle through growth and loss when it comes to my brows and lashes. Thank goodness I have always been artistic and have gotten to be a pro at bonding hair pieces, applying brows and gluing lashes. You can decide to wear hair or not, its a personal choice of coarse but for me an all lace human hair piece is the way to go. The best you can afford as often as you can afford them. Maybe allow yourself to look at this as someone telling you you get to choose the hair of your dreams and then get really good at making it look as real as you can, challenge yourself. Do not settle for lame ridiculous or unrealistic wigs because you can find ones that will really knock your socks off. I want to tell you just how amazing you are, please know that. I want you to get your High School diploma anyway you have to, web academy or in a brick and mortar building then get into college and do not stop until you have gone as far as you can go with your education. Please don't allow this setback to stop you from being the most intelligent, beautiful, successful person you are destined to be. My wish is that all of us in the Alopecia community become extremely successful, fulfilled, and happy human beings, we have been through so much and deserve it. I swear it will get better, I know it sounds crazy I remember feeling that way totally but it really is true. If there is anything I can do to help you just let me know. Please check in often and keep sharing...
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