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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 jinna on
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I am the mother of an 11 year old who lost all her hair at the age of 7. She is entering middle school in the fall and I think I am more nervous than she is. But my advise is to be yourself dont let alopecia hold you back from being who you are. Your true friends will love you for who you are not for how you look. There are thousands of people who deal with far more than hair loss. I remind my daughter all the time tha t she is sweet beautiful kind and caring and a great friend. Dont let this hold you back from being you.
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Permalink Reply by Dom on
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but it does define me?
I would agree BUT it depends on :
1 How you react to other people.
2 How you react to your Alopecia.
I ham 52 and have been AU for 10 years. how quick it has gone!. I too had lovely hair and i would like it back BUT there is no cure or treatment.
Most women eventually go down the semi permanent makeup and wig route.
Forget about cures or treatments.
Start looking at the above route.
I had semi permanent eyebrows done. Should have done it years ago and i use a black liner on my lower lid (not very well....lol
I'm an ordinary bloke and it makes me feel better.
DO THE SAME!
Instead of cures, treatments ( none) tears, staying in, moping, self pity.
Get planning wigs and makeup. Most people come around to this after some time.
Don't waste your time...
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Permalink Reply by RENEE on
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I can feel your pain like I was in school yesterday. Kids can be very hard. I've been bald since I was 6 I'm now 38. My best recommendation. Enjoy your friends who accept you. Grow tough skin to deal with the rude and immature because even at my age I still experience them. Make sure your teachers know about your condition. Report any issues immediately to your school. Keep your friends around you to help. Sadly I can give better advice then I took years ago. I remember hiding in bathrooms from mean girls. One important think to remember. You are beautiful!! Even when you look in the mirror and see the whit head, tell yourself your pretty. It really does help. Maybe when your older you will tattoo your head like so many of us do. When you feel sad and you have had a bad day just remember tomorrow is a new day. One day at a time. And you are beautiful.
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Columbia University is presently doing a study with an oral medication that seems promising. You should try to get into the study. I know they are looking for people like you. There are no major side effects and I know its worth a try. The breakthrough on Fox News with that man who grew hair after 7 years was taking the same drug as the study medication!
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I posted about this too. I submitted my DNA to one of the ten or so facilities accepting dna (MD Anderson in Houston) who submitted my DNA to dr. Angela Christiano in NY there. If u are near Houston I highly recommend the facility. Dr. Joyce Osei is the liaison there I went through to get communication started with Dr. Madeleine Duvic. I am very very happy I have already submitted my DNA because dr osei implied that when the trials expand to houston...she cant PROMISE anything but it appears I might be a candidate to try what theyre trying right now!
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Permalink Reply by Ruthie on
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Hi Kat,
I live in Houston, can you tell me who I need to contact to submit my DNA and get things started to be on the list for the trials. You mentioned a few names, but i am not sure which one to contact.
Thank you
Ruthie
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My son is 15 and developed Alopecia Universalis when he was 5 and had just started kindergarten. He was a very happy little guy and went to school completely bald. He had lots of friends and kids that age didn't seems to mind at all weather he had hair or not. When he started junior high that all changed. Kids at that age start becoming more aware of looks and how to look cool so they can fit into the popular crowds. Needless to say that is when he lost his best friend and a lot of other what we thought was good friends. They were embarrassed to be seen with him. It was very very difficult for him to accept and he couldn't understand why. We had many nights of crying and him not wanting to go to school. He then decided he wanted to get a wig. After i did a ton of research I we called Hair Club for Kids and they provided him real human hair wigs, up to 4 per year until he turns 18 with no charge! They are an awesome group and it was life changing for him. People have no idea that he is wearing a wig. Unfortunately kids being kids realized that he was wearing one since he had went all these years without hair. He now completed his Freshman year in high school and is getting ready to start his sophomore year this fall. He does have friends though they are not what the kids consider the "popular" kids but they are far better friends to him that aren't focused on the outside but are focused on what's inside. He really struggles as well, it's been very very difficult for him and he still has a lot of confidence issues. He is afraid to talk to girls due to rejection and feels he will never be able to have a girlfriend because he says they have no interest in dating a boy with a wig. He feels very alone and unloved, not from family but from the outside school world that he is in, and I understand how that is different. Kids are very cruel at school, I had issues when I was little fitting in but not to the extent that he or you are dealing with. The thing I tell him is these people you are in school with mean nothing, three more years and you will never see most of them again. Focus on your school work getting good grades and find something that makes you happy to do. Then once you graduate and get into college, you wont have that silly highschool drama and clicks to deal with. Things may look really bad right now sweetie, I understand, but it will get better and there is a light at the end of the tunnel for you, just hang in there, things will get better! By the way my son is in band and that has been the best thing for him. He has made a few friends in band and hopefully will make more in the next few years. He also just got his drivers permit which has been a huge confidence booster. My heart breaks for him and you as well, I would trade places with my son in an instant if I could, he is my hero and you are mine as well! Please hang in there it may seem like an eternity before you get out of high school but it will go by fast. You have the whole world out there to conquer with or without hair, it won't make a difference I promise! Check out Hair Club For Kids, it's through Hair Club for Men but it's for girls and boys and they are great and make beautiful hair! Hugs!
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Alopecia does not define you don't let those stupid and cruel people define you. Please. I know its difficult. Even at age 67, Alopecia universalis almost 20 years, I face the daily decision of to wig or not to wig. If I don't wear wig inevitably someone is commiserating with me about my "cancer" treatment. It's awkward to say the least. We need MORE EDUCATION, less bullying.
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Permalink Reply by Sarah on
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Things are going to get better next year. When you get to high school everything changes. I just graduated high school and have alopecia areata which is still progressively getting worse, to the point where I don't have hardly any eyebrows and now I'm wearing a wig like you.
My best advice for you is to gey involved in something you are really passionate about. For me it was music, I joined band my freshman year and it was one of the best decions I ever made. So weather you like sports, art, or the board game club join something! Through them you'll form a strong support group and they will help you deal with any jerks.
And sometimes life just sucks. Everyone has those days, whether they have alopecia or not. Everyone has something that they're going through. Yours is just visable to those around you. If you ever need someone to talk to, I'm there. This site helped me a lot through high school, it's always great to talk to someone who understands.
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Hi, I'm 15 and I'm going into the 11th grade in the fall. I know how you feel, I promise. The best thing I can tell you to do is something I have been too scared to do, which is tell people about your condition instead of hiding it. You can stop worrying about what people think and start focusing on more important things, like your grades and college and your friends. I honestly dont have much of a problem with myself, so if other people do that's their loss. Do whatever you want to do and dont let anyone tell you who you are. Dont let alopecia define you. Dont let yourself think you are not beautiful. Why does hair matter anyway? You have to start thinking about what's more important. I would say stay strong but you already are. So next time someone asks tell them everything. Then they'll know the amazing person you are.
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Permalink Reply by Danielle on
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Yes, it does define us! I am 42 years old. I lost my hair totally when I was 4. I went through every grade of school thinking next year I'll have hair. By the time I get to High School I've have hair then by the time I am married and then maybe when I have kids... I do not have hair. It does define us. I have to tell you it makes you stronger! I know how devastating to not have hair, a teenage girl. You have to know you are beautiful. I have never gone without a wig and found lots that were really nice throughout the years. It is a personal thing but I would not go without mine. Makeup does a lot too. There are so many things out there to help you. I don't know where you live but insurance pays for many hairpieces (prosthesis) also. Talk to friends and family you will find I am sure that you have lots of love and support. This community is a great place also. Happy to talk more to you.
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