I have had alopecia for about 8 yrs now. It all began my Junior year of high school. My hair line started to rise from the back of my head. I was a cheerleader and we had to wear our hair in super high, super tight ponytails, so I figured that was the problem. But then the bald spot just kept getting bigger. For the rest of that year and the next I wore my hair in a half ponytail to pep rallys and games to conceal the bald spots.
It wasn't until my senior year that I was diagnosed with AA and even then I payed no attention because I thought it would just grow back. Slowly but surely my hair started to thin.
By 2002 I was doing musical theatre and I was getting bald spots in the front part of my scalp. My mother, who is a seamstress would make me gorgeous headbands that I would strategically place to hide the spots.
Then a year later my eyebrows started to thin. I remember I had just done a show where I had to wear these leaf looking eyebrows as part of my costume. Since my eyebrows started to go right after that show I thought maybe it was just the glue that made my brows temporarly fall, but then my eyelashes went too.
I went to the dermatologist for the second time and they said I now had Alopecia Universalis. For my next show I wore my first wig and at the end of that show I just kept the wig on.
I began treatment which included getting steroid shots on my head and eyebrows (PAINFUL), and I can tolerate pain. And at the same time I was doing phototherapy which involved me standing in a suntan booth looking cubicle daily. I had to cover every-part of my body except my head, and it was hot. My Photo-therapist Alice was so sweet and supportive.
That treatment did not work. They began to give me the pill form of steroids. And I actually got results, but the symptoms were horrible.... I was always hungry, grumpy, and I gained lots of weight. The wight was not an issue but I felt so unhealthy. I had trouble breathing and my face was constantly swollen. I was still dancing in college but I was so tired I could't keep up. So I decided to stop the pills.
I never felt weird about having Alopecia, I just hated the stares. They were just too questioning. At that time I also worked with kids and that was hard because I didn't want to have to explain it to them. I didn't know how.I felt as if people either knew it was a wig or they didn't. If they assumed it was my hair I felt as if I was lying to them. I couldn't complain, my other health was fine and the disease is not deadly. I hate having to draw my eyebrows every single morning.
8 years later I am just now starting to be open with myself that I have alopecia. This semester was the first time I said out loud in a big group of people and it felt good!
I am a full time television production student that enjoys doing dance and theatre on the side. My friends and family have always been very supportive, especially my sister. Even though I have comfortably adjusted to life with alopecia, I am just now realizing that it is easier to say it out loud. I am actually working on a PSA project for class on Alopecia because I think people with AA need to know that there are support systems out there. I haven't been to any but that will change real soon.
Hi Annette, I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us and we look forward to your input. Cheryl, co-founder
Hi Annette welcome. I live about a hour north of L.A. in the Antleope Valley i am looking to get a support group goign so if you are interested please let me know.
Hi Annette - sorry for the delayed response I have been on tour and just got this. If it i not too late I would love to be part of your project!
Let me know what you need and I'll be there!
Huge smiles,
G
xx
rj, Co-founder
Sep 2, 2008
Cheryl, Co-founder
Sep 2, 2008
JeffreySF
Welcome to Alopecia World.
Jeff
Sep 2, 2008
LeslieAnn Butler
You are beautiful!
I just wanted to stop by and say hello...how are you doing today?
LeslieAnn
Sep 2, 2008
Roger
Roger.
Sep 2, 2008
Jennifer
Sep 2, 2008
Linda
Sep 2, 2008
Veronica
Sep 3, 2008
Mary
Sep 7, 2008
Alexandra Youmazzo
MY daughter Alex has Alopecia universalis. She is eight years old. We live in Valencia, Ca. If you could use her let us know.
Sep 8, 2008
Alexandra Youmazzo
Sep 8, 2008
JayB
Sep 12, 2008
Georgia Van C
Let me know what you need and I'll be there!
Huge smiles,
G
xx
Sep 14, 2008
JayB
Oct 1, 2008