Alopecia World
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I need someone who knows what I'm going through/been through
I've had alopecia universalis since 2006 and have been going through it with no one there to understand exactly what I'm going through. I have support, just no one who truly understands what it's like. It's taken a lot to get me to come on this site, but I realized I can only be strong for so long. I need someone who knows.
Replies to This Discussion
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Permalink Reply by charlene lewis on
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HI Jen, if there is anything I can do to help,please let me know...and welcome hugs Charlene
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Permalink Reply by Tracey Salvadore on
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I have had it since about the same time after I had my first child. It stinks but I've recently come to terms with it if this is my destiny. There are many people that life threatening illnesses and I am glad I don't have that. I have every treatment so if you have any questions I can help. I am determined to help find a cure and am working a two possible treatments but nothing to report yet. Hang in there its coming soon.
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Permalink Reply by Michael on
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Hi Jen. I've had alopecia since 2005. I think it's a bit different for a man, but still, I'm here if you need someone to talk to.
Michael
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Before long someone Will b by to offer their support. You will be so glad you joined aw . There r plenty of inspirational people here that have gone through exactly what you have. It does help to meet others. It was a major turning point for my daughter when she was introduced to someone with au who had already learned to accept it and live happily with it. Hang in there. We r here for u :)
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Permalink Reply by mdmonsen on
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I have had it since 2004 and I can understand how hard it can be to get anyone else to understand. My friends joke about it with me but they don't quite get all that has come along with it for me. Just the other day my eyes were hurting really bad and it was because I kept getting dust and dirt in my eye that your eye lashes normally help prevent from getting in your eye.
I have had the same hair style for so many years that I would like to have some variation. I have found that I love all kinds of hats and use that to change my hair style. Just know you are not alone and there are plenty of people who want to help give you support and that are going through similar situations. Best of luck to you on upcoming events in your life and may you find happiness and joy!
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hi jen
well, the first thing i must say is that you are far from alone. i know you may feel that way, and i'm sure we all did at some time or another. when i lost my hair back in 1983, there was little or no support available to me. no internet, no groups, nothing. i was scared and depressed and felt hopeless. dermatologists would tell me there was nothing they could do, and psychiatrists told me i had to delve in to my past to see what kind of relationship i had with my mother. NO HELP HERE!
over the years, so much has come into play. if you stay active on this website, you will have more help than you can imagine. it DOES get easier, trust me. you have to allow yourself to grieve your loss, embrace the feelings that you will go through, but make sure you reach out over and over to stay in touch with others in this predicament. before you know it, you will have hundreds of "alopecia" friends who understand your fears, your questions, your feeling of isolation ...and all that goes with alopecia.
i don't k
now where you live, but there is a group near me called "bald girls do lunch". you can google it. it is run by a gal named thea, and we literally all get together and do lunch while thea talks and brings others in to chat about wig options, head covers, makeup application....you name it...she covers it. i went the first time knowing no one, and some of my closest friends now are from meeting them there. it takes a little courage to step out and get involved, but there is nothing worse than thinking that you are suffering alone and no one cares. the world of alopecia is a loving, caring community who are just waiting to help you and lead you along this strange journey that we all have been forced into.\if you found this site, you are well on your way to finding many more links. the national alopecia associating puts out a nice magazine every few months that is just loaded with events, fundraisers, merchants, etc.....so see if you can get on their list. it's free.
just don't give up! dive in, get your feet wet, and this will all be so much easier for you.
let me know if you ever need to chat. i am there for you, as are thousands of us from around the world.
good luck to you jen....and like i said.....it DOES get easier. it may never go away, but you will find peace with it if you do the work....and stay connected. love to you! paula
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I have battled with alopecia for most of my life, usually only a quarter size site at one time. However, three years ago, I lost 80% of the hair on my head.... devastating! I was so upset, went from dermatologist to dermatologist to doctor, etc. They kept telling me that I probably wouldn't get my hair back since I had lost so much. I know how you feel, I had people supporting me, and telling me at least it wasn't cancer or something like that, but I still was just so upset about it. There isn't much to say to make you feel better except there are others of us that have gone thru it as well. For some unknown reason after two years, my hair grew all back with the exception of one small area. I hope this helps a little!
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Permalink Reply by Sheena on
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Kathleen- I've had it most of my life as well, but never lost all of it until this year when about 80% is gone as well. I'm worried it won't grow back like it used to since I did lose so much this time around. Has yours started to come back at all or is it still mostly gone?
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My sister got it first in 2002. I have had it since 2009. It is hard adjusting to life without hair when you had hair for 33 years. I was lucky to have a sister and another friend who had gone through it. I don't miss shaving, but I don't like wearing wigs.
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Where do you live? There a lot of group around the world. I have never had a friend or known anyone else with AA. At 53 I've come to the realization this is what I been given and I better be happy before my life is gone! I just shaved my head at 51. I also have Vitilago So I also have white splotches on my hands and feet. And hypothyroidism. Every time someone asks me if I have cancer I gladly tell them about my conditions. Its not our fault our immune system is messed up! I wear great hats and have decided if I'm going to be bald I'm going to be BOLD and live it up!!! We had one guy in high school who has AU and I've always felt bad for not talking to him about it but as I know now hes had lots of friends and is fine with it,he wrote on facebook it was the best day of his life when he took the wig off! Please live your life its just hair,show people your you with or without it!!! You've got a lot to give this world be you. Blessings Linda
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Permalink Reply by Sheila Pinder on
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Hi Jen, I have had alopecia since 1998 (started losing hair) and an official diagnosis in 2004. It is a tough road to travel There are days you have to lift yourself and work on your self-esteem. I don't wear a wig or hat on a daily basis. I stand tall and walk tall. I consider myself blessed. I see people around me with cancer, diabetes, and other diseases. If all I have is hair loss it is a blessing. Think of the positive characteristics that you have and always value yourself. Never let others bring you down because of this condition. Stay positive, live positively, and keep your chin up!
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