Hey all. My name is Hannah and I've had alopecia since I was around 5 or 6. It's spotty all over my body, from head to toe. I had graduated high school this last year and around December decided to stop medication (not working/barely) and steroid injections. A have given up hope for a cure that I so desperately wanted. I have tattooed eyebrows because mine are so space, they are non-existent. Same with my eyelashes. I also am going to Americorp in a few weeks for 6 months. I'll be living with other people around my age. I'm just going to come out and tell them, and be confident.

My issue is my head at the moment. Every time I run a comb through my hair, it comes away with handfulls of hair. It is making me sick to my stomach. I've decided for a while to just get on with it and shave my head already and get use to wearing wigs. I was going to do it tonight and had told my dad. He looked like he was going to cry and said I had plenty of hair and it looks fine- there goes my confidence.(I actually showed him the clump of hair from my comb.) He feels so bad for me and I feel like that is putting me down. I don't want people to pity me. I can live with it. I've made it this far...
I'm having second guesses right now. My hair covers about 75% of my scalp but is in no way good. It's pretty thin.

Can you please give me some encouraging words/stories for this? I'm only 18 and doing this by myself, so it's pretty hard.
Thank you
Hannah

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hi Hannah,

u are strong. all alopecians are strong.
I am a male but I can totally relate to your sadness. I was cocky and I lost my hair at the age of 23 so I know the pain. am 33 now.
talk to your family. Tell them that you need some kind of support but you don't want them to feel bad for you. this will help Them. but you will still have some pain. this is the reality.

my suggestion for you in no particular order...
look if u could try xeljanz. some people had good success.
I know personally 3 girls around your age wearing wigs because of Alopecia and guess what? they look very good. find a good wig, am no expert but you can do some research on the Internet. if you are not ready to go outside bald don't rush it seriously. a wig is a good option!
Hannah- just saw this 2/1 post, as I am new to this site. But I related to what you wrote in a couple ways. One, I am trying to decide whether to shave my head or not, and two, getting mixed advice/responses from the people in my life. Some of them say, "go for it! Shave it. It will be better." And some say I should keep what I have. I guess it comes down to us just following our own instincts. Personally i have so far not shaved mine, despite my wife saying i should bc my hair looks like a very bad haircut. What did you decide?
Hannah...
I am 19 and first noticed my alopecia at age 12. Your story reminds me of my own, you're right to be confident in telling those around you what's going on. Remember that it is a disease that you cannot help and those around you can't help. And that's okay, we are strong! I am now at 90% hair loss and still am not brave enough to shave the last little bit. I wear a wig that I was very blessed to aquire from a lady who was fighting breast cancer. Now day to day I wear that to work and out and about and people can't even tell!! I've told some of my coworkers and they are always surprised. My boyfriend has been by my side over the last 2 years I've been really losing a lot of hair and reminds my of your dad, I told him this morning maybe ill finally shave it off and he looks at me sad and says its up to you, it makes me sad. I have thought about tattooing my eyebrows on as well! Id like to know more about your experience with that. I'm here for you.
Makayla

It took me 44 years to finally shave my head, and that was because I started wearing full lace wigs. I've had alopecia since I was 10, so I used the little hair I did have so I could bobby pin my wigs to that. Later on in life and for about 10-20 years I had a point-bonded system with a lace front. I had to stop because it simply got too expensive at $3k plus $200 to reattach every six weeks. So I had to shave my head. The first time was hard, but it has gotten easier each time I have to detatch/re-attach.

Hannah, I think if you feel as though shaving your head will make you feel better you should do it. I'm contemplating the same thing now - to me it feels like it would be freeing because I'm hating watching/worrying about my hair getting worse. I could also relate to what you said about your dad because my husband is so supportive and feels so bad for me going through this that in some ways it makes me feel worse. If you do shave your head your dad will get used to it. Try to put aside his and anyone else's feelings and think of yourself and what makes you feel good. You're not alone in this - we're all there going through a version of this alongside you, or are close to someone who is.

My 17 year old son was diagnosed with alopecia 5 months ago. By the time he was at 50% spotty loss with thick hair elsewhere he decided to shave his head.It was good idea for him because he rapidly lost all his hair everywhere. I helped him and for some reason it made me cry terribly. It appeared that I took it harder  than him though I am positive that isn't the case. Seeing one's child have to deal with such an event is heartbreaking and then come the tears. I would trade my place with him in a second...but can't...so I watch him deal with his condition. 

I wish he would own his baldness to make it easier but I know he isn't ready and is still bothered by his situation despite his brave efforts. He wears a hat all the time, even around the house.

He's also begun an experimental treatment, Xeljanz. There is hope for even long term sufferers.

Let us know what you decided and how you're doing. 

it's easier said than done, but I think shaved clean looks better than very patchy. Wear a wig, but just for style not to hide your condition. I think the stress of constantly worrying about whether anyone notices the patches, or looking for new patches every day would be very hard on anyone. No one should be ashamed of what they look like, remember that confidence is the best thing to cover up any condition. Own your look, don't let your look own you. 

My son is currently in mostly remission, with only a few dime and nickle sized spots that are responding well to topical steroids. I doubt anyone other than us even notices. I tell myself that if it gets noticeable (like it was a year ago) we would shave it down so that could be his "look" and not his "condition".

but like I mentioned, I'm sure it's easier said than done. 

Hey Hannah
I actually shaved mine when I was 8. I stated losing my hair when I was 8 in clumps and got to a point I could put my hair in a ponytail or wear a headband. I'm almost 27. No hair. My eyebrows comes and goes. My lashes are falling out.
For me it was like ripping a bandaid. It will hurt and sting but it will go away and you'll be glad you don't have to fuss or stress over the little amount of hair you have left. I didn't star wearing a wig till I was 18 btw.

Hannah
It is very difficult decision to shave your hair and you need to be ready for it. I was 12 when first started loosing hair but it was just spotty so i was able to hide it and it always grew back. For years right after a stressful time i would get some sopts of no hair but it all would grow back. Two years ago it just got bad and never had the turn for better.. i bought few wigs but was so uncomfortable and self-conscious when had them on. Still am. I wanted to shave as i couldnt go out without a wig anyways but my boyfriend asked me to wait a little to make sure i was ready for it... it sounded cool and badass but he knew me better than myself -i would of freaked out seeing myself bold. So i waited and did some sole searching and coming to terms with my condition . So few months later i brought it up again and said it is what it is.. i just need to embrace the situation and be happy! So he took my hand and said "now you are ready" and he shaved my hair. It was so uplifting and feeling of a relief. I think i have more confidence now then before - before i was constantly worrying how my hair or wig would look. There are days when I am out and i wounder why People stare at me - i am so use to my look and i forget I look "different" so then i just look back and smile. People who are judgmental do not know what to do with your confidence. People who admire your strength will give you a hug,or complement you and give you the encouragement and strength-really do touch your heart. aND then there are the clueless ones- who are just rude and will ask if you have a cancer. Most times they dont know what alopecia is so now I just smile and say NO and walk away. The moral of my story is you have to mentally ready to see yourself bold before you do it, but once its done its liberating. People can tell you are beafitful but YOU have to feel it to believe it. Bold is beautiful! you are stronger than you think!! I am here for you should you it!! Sending hugs

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