Alopecia World
www.alopeciaworld.com
I need someone who knows what I'm going through/been through
Replies to This Discussion
-
Permalink Reply by Was khan lodhi on
-
hi my name is juan i am based in malaysia from last three years i got this 10 months ago now i fully recovered and it took me four months to find out how i can get rid of this and used every way possible but i find the cure and now happy living and want to help other who can also recover from this my mobile number is +60102526429 and if need advice can call me or message me its never too late and its cureable.
regards juan
-
Permalink Reply by Kirsteen Forrest on
-
Hiya Jen! My name is Kirsteen and I also have suffered from alopecia since 2005 with support of my friends and family but did not have anyone to speak to who really knew and understood. I only found this site in 2009 and it truly was inspiring and made me find a whole new me that I did not know existed. You have joined a family here and will get all the help you need. Kirsteen x
-
-
hi my name is juan i am based in malaysia from last three years i got this 10 months ago now i fully recovered and it took me four months to find out how i can get rid of this and used every way possible but i find the cure and now happy living and want to help other who can also recover from this my mobile number is +60102526429 and if need advice can call me or message me its never too late and its cureable.
regards juan
-
Permalink Reply by Joni on
-
I've had AU since 2001 and while it hasn't always been fun, it hasn't been that terrible either. I choose to look for the positive. Always remember that you are the same person inside as you were before alopecia. What really matters hasn't changed. People may not understand but you can educate them. Most of all, remember that life is wonderful, with or without hair. Stay strong!
-
-
Hi Dear Jen,
I have alopecia universalis since I was 12 yrs old. I can completely understand what u r going throu & how people around u dont understand what u have & must be feeling. I used to & still feel that way. But, now I have come a long way & realized those who dont understand what u have or going throu r possibly ignorant & they also dont have any rite to make fun or show pity on us. I have started to accept my prob. & moving along with life taking all the gud from it. I have started thinking positive that at least its not a physically painful illness, even though u need to emotionally cope up a lot with it. But, still its better in some way. I thank God for not giving my any serious illness where people r bed ridden or all the time get needles inserted in them!
If u need any help, I am always there with u.
I support u completely as I know what u r going throu.
Take care,
Priya
-
Permalink Reply by Hallie on
-
Hi Jen, I know exactly how you feel, I may only be 12 but I have feelings....if you want to be friends on the site i'd love to tell you my story and how t is all going well, Ill start by saying I was diagnosed when I was 5 with Alopecia Areata and have been suffeing especially through my teen years with bllies and people who arescared of me becase they dont knowhow it is and how i feel.
-
-
I have had it since my youngest daughter was born and she is now 25. It is something I still have problems with. I even loss my wig when the winds were blowing really really bad. My oldest daughter had to help me find it. I have tried to get my insurance company to help me get a nice wig. At first they were, but then when they found out that it was not cancer related they turned me down. (bummer) I have not really invested in a good wig because financially I can only afford them for the strip mall stores. I have loss about 99.1 % of my hair loss the other hairs all over my body. I am starting to loose my eye lashes and I had to have my eyebrows tattoo on. Right now I am not loving life and I don't think I ever will. I hate not having any hair. But, I truly refuse getting any kind of injections in my head just to see if it works. Hang in there Marlene
-
Permalink Reply by Kim Culberson on
-
Hi Jen, I have a daughter "Jen" Jenna. I developed AU in 2001 and had it for 7 years. I started Methotrexate for my arthritis and within 5 weeks of starting the drug, my hair started to grow back. I along with all my doctors were shocked. Usually Methotrexate causes hairloss but it suppresses your immune system and since AU is your immune system in over drive, it seems to have put the disease in a sort of remission. If I stop taking the drug for more than a couple of weeks,(you only take it once a week) my hair starts falling out again, in the usual circle patches. When I do get patches, I get kenalog injections into the spots and it takes about 5-6 weeks for the hair to start to grow back in. I have posted my regrowth on here before, but met with a lot of scepticisim. Trust me I was a sceptical as anyone. After being completely bald from head to toe for 7 years, I had resigned myself to the fact that I would be bald for life. I know if I go off the med for good that I will be bald again, so as long as my liver function stays ok ( it is hard on your liver) I will stay on it. My rheumatoid arthritis has been great because of the methotrexate(which is why I take it) I am not sure if a Doctor would prescribe this med just to regrow hair, because of the possible side effects, but for me it is sure nice to have my hair back. My eyebrows,eyelashes, under arms and bikini area (you know what I mean) has never come back, but the fine hair on my face, arms, legs and some of my body has come back.
Good luck to you, it is a long adjustment period living with no hair, and to tell you the truth I had learned to accept and live with it. It made me unique. I felt strong because I seemed to handle it so well, and had lots of people admire me for my positive attitude. (they never saw my private tears and frustration when I had a pity party) but all in all, life is what you make of it hair or no hair. I have lived both ways and can tell you with a smile on my face that having no hair was a lot less maintenance! ha ha.... I had a "freedom wig" from New Zealand and loved it. I have it in safe keeping in case my AU comes back! I now hate washing my hair everyday, having to get it cut and colored(very expensive) There are draw backs to everything.
Keep a smile on your face and your head up....this is not fatal! You are beautiful whether you have hair or not!
If you ever want to talk give me a shout....I am on facebook too- Kim Culberson
-
-
Hi Jen, you have had the most replies for a post in under a day and you only wrote three lines(some going)
My name is Dom and I. have had AU since 2005.Previous to that I had AA four times but most of my life I had full hair.
There is no treatment let alone a cure for any Alopecia .....except remission. Often people think an injection , cream or herb is working but it's just remission.
Even when i had AA i never thought i would eventually go AU at 44 but all is fine and i accept it. I have better things to do in my life than worry about Alopecia
-
Permalink Reply by Kay on
-
I started loosing my hair in the 3rd grade, but the time I was in 4th grade I was completely bald. My family was a middle class and could not afford a wig, so for the longest time I wore a baseball cap to school. All/most girls in middle school and beyond have a very difficult time. Young kids can be so mean, and it can be so hard to develope a strong/confident sense of self when you are trying to hide from the world. By the time I was in high school, I had a wig but it wasn't very natural. It wasn't until I entered college when I was able to finally see beyond the walls of school and the echoes of the name-calling/teasing and see myself for who I was. I am now a professional woman in my 30's. I am still completely bald. And yes, I still choose to wear a hair piece (much more natural and comfortable than a wig!) I change my hair piece every 2 months or so and am now having fun creating unique hairstyles and colors each time. It is kind of nice not having to wait for my hair to grow out to wait to try a new cut/style. My hairstylist loves working with me because "I am always trying new things and do such funky things with my hair." My friends and colleagues all know about my condition: I don't announce it, but I don't hide it either. I have half an eyebrow, and I cut my hair to show it off even. My boyfriend thinks it's "just another great part of me that makes me unique." :) Do I like the fact that I am bald? Absolutely not. But now I am at the point in my life where I am me, who happens to be bald. Not someone who is bald, who happens to be me. This is such a challenging condition to go through, and I wish I had some magic words and advice to give. Things WILL get better and people WILL love and accept you. What took me almost 2 decades was to learn how to love and accept myself.
-
Permalink Reply by Tania Hall on
-
sorry Jen, only someone going through this truly understands. I have had AU for 16 years now and only have I felt comfortable these last few years. I became involved in wig banks for ladies undergoing chemo, helping friends losing their hair, and in other words focusing not on myself, but others. I went to see a therapist and even took antidepressants while I learned to cope, and now have some beautiful wigs in different colors and styles and now consider my hair fashion, as if it were clothing of different styles. Having supportive friends and family makes it easier. I wish you the best, remember you are not alone....
© 2024 Created by Alopecia World.
Powered by
