June 14th 2004. I bet I know what you’re thinking. “That’s when her hair started falling out” Right? Nope. That’s when I had my ability to walk taken away from me. It was a normal day, and I was training for a big national competition in Australia with my horse. I had been riding for 10 years before that day, and falling off was just another thing. No big deal. I had heard that you had a 2% chance of something going horribly wrong if you fell off a horse, and I’d never come away with anything more then a couple of bruises and some sore muscles until that day. I was now a paraplegic. Being faced with the fact that I would never walk again. Ever. That I would be completely dependant on a wheelchair for the rest of my life and have to learn all over again to do simple tasks like looking after myself. It was hard. Very hard. But not the hardest thing I’ve experienced.
Just before my 16th birthday, my hair began to fall out. Very slowly at first, just a few more stands then normal. But in the next week it became more and more noticeable. There would be hair on my pillow, in my sheets, stuck on my clothes, on the lounge, in the shower, absolutely everywhere. Handfuls of hair would painlessly and effortlessly come out just running my fingers through my hair. I used to sit on the bottom of the shower in shock, as I watched my hair run loose with the stream of water and watch the water rise as the hair covered the drain. I was petrified of brushing my hair. I wanted to keep the small amount of hair that I had left. I felt so ugly, so alone, like such a freak. I was a girl! A YOUNG girl. And here I was holding my hair in my hands crying and hoping to God that this was just a horrible, nasty dream.
But it wasn’t. It was real, and after a while I decided it had to go. I was sick of the torment of showers and having to brush knots out of my hair and end up brushing out hundreds of strands, having it cover the entire house and having no control over it. So I decided to shave my remaining hair off to raise money for the Leukemia Foundation of Australia. [click to continue…]
Insurance companies don’t cover the cost of wigs, also known as hair prosthesis, when hair loss is caused by anything other than chemotherapy. And even then, not all insurance companies cover the cost of the hair prosthesis for chemotherapy related hair loss. Lisa Fayed, the cancer guide from about.com writes “If your insurance company does cover the cost of wig, you may need your doctor to write a letter or prescription that includes information as to why you need the wig, noting that it is not for cosmetic purposes, but for your emotional well-being. Request that your doctor prescribe a “hair prosthesis or cranial hair prosthesis”, not just a “wig”. Insurance companies are very particular of wording, and most will not cover a “wig”, but will cover a “hair prosthesis”, even though they are the same thing.
Well the “emotional well being” reason is still applicable for whatever the reason the person is suffering with hair loss. My insurance company covers the cost of orthotics, those little plastic like shoe inserts that are custom ordered from the podiatrist. The cost of the orthotics at my podiatrist, $500. That would provide for a decent hair prosthesis for a hair loss suffer. I suffer much more from my hair loss than I ever did from my unbalanced feet alignment. My foot ailment never caused me any “emotional well being” distress, just a little discomfort and pain, but yet that is covered under my insurance plan. They also cover “psychological treatment” which many women end up needing due to the devastating effect hair loss has on a woman’s self image. The insurance companies should realize that they are being penny wise and dollar foolish. They are probably spending millions on psychological treatment sought by people suffering with hair loss, when if fact that number could be cut down dramatically if they simply offered coverage of the hair prosthesis.
I was watching TV last night when a commercial came on, it looked like your typical hair shampoo commercial you always see, but it most certainly had a surprise ending. Check it out.
Julie has sent me over her pictures of before and after pictures taken approximately 6 months ago. She was chosen as a model for Reprieve Hair, and these are the pictures from the shoot. Since her hair loss conditioned has worsened and her hair is very fragile, she can no longer wear it.
Julie, I just want to say how proud I am of you and how much I admire you for being able to be such a strong person, and for also being such a strong voice for women suffering with hair loss. You are incredibly beautiful inside and out. Through reading your story and through reading other women’s comments, I start to feel better, because I don’t feel so alone. I find that there is hope and that I may be able to accept myself one day. To move on and appreciate all I do have. So thank you. Read more about Julie’s Story
Julie had made a comment on the “Daily Hair Loss Grind” post about her suggestion for the steps to make yourself “wig” ready. I thought it was so beautifully put together that I wanted to share it with everyone here as an actual post on the blog. So here it is:
Steps to make yourself “wig” ready
Read your daily affirmations of the things you are grateful for, what makes you beautiful and strong? Do this for at least one week.
Call your friends and tell them about your “Day of Beauty” excursion and make appointments to get your nails done…makeup, whatever you want.
Locate the wig shop within the vicinity of the places you want to visit.
Write a journal about what it is you’d like to achieve when wearing a wig…create your positive thoughts and believe in them. I used to say, “i’m going to look just like Sandra Bullock with my new wig, I can’t wait” or I’d picture my face in so many different styles…so I new what look I wanted to achieve.
Plan an outfit for your day…wear something comfortable and try on different hats…use makeup lightly and embellish your favorite features.
When you wake up the day you are going, don’t look at yourself AT ALL! Ask your friends if something is in your teeth! Just avoid mirrors. Bring a “before” picture with you and keep it within reach, like in your wallet or pocket. Look at yourself, that’s who you will be again…pick out different styles and try them on..only look at the mirror once, it’s completely on your head! Wear your new look for at least 3 days and go everywhere with in on…Put it away for another 3 days and write about what it feels like for you. Find it within yourself to want change…and then do it.
Julie has left some incredibly wonderful, helpful, heartfelt comments on this blog and now she is sharing her story. Here it is:
For 10 long and arduous years, I’ve suffered from female pattern baldness. At 17, the pain of looking at myself in the mirror caused major depression and my health continued on a downward spiral. My gynecologist prescribed some birth control to regulate my periods and my acne, but the condition worsened. Soon, I was also put on anti-depressants, because I got depressed from the acne and hair loss…then, I couldn’t sleep at night because of the medication that I had to take for my hair loss and acne, and the depression because of my hair loss and acne! Phew! breath…so you see! After 10 years of tests and the determination I had in figuring out my problem, I figured the problem was bad practice of medicine. Well, 10 years ago is different and 10 years from now, answers will be different.
Working in retail with spotlights gleaming on my shiny scalp resulted in stares and inspections from nosy customers. No one understood the shock and devastation of losing clumps of hair. [click to continue…]
I stumbled across something online today that said that Tina Turner actually suffers with alopecia universalis. I’m not sure if thats true or not, as many African American women wear wigs and hair weaves. Most often I think it is for style, but who knows this could be why I have never actually have seen a picture of her without her wig. She always looks so fabulous, the wigs just add to her beauty.
But after reading that I started wondering about the other famous women who are known to wear wigs all the time. Cher and Dolly Parton are the ones that come to mind instantly. Is it for fashion and style or is it because they are also losing or have lost their hair. I guess my personal thought is that they most likely have some form of hair loss, whether it is alopecia areata, or just plain old androgenetic alopecia. I could be wrong, I don’t have any evidence to support that, but why else would you spend your whole life wearing a wig?
When you lose your hair I think you often look around for others who are experiencing the same condition, you just don’t want to feel alone. Maybe thats why I think they too have hair loss, it could just be my minds weak attempt to cope better by trying to lump their situation into the same category as mine… diagnosis hair loss.
I found an interesting article that was published back in 2003 titled, “Dolly Parton Unwigged? Never!” In the article Dolly Parton says she would never step outside the house without the wig and makeup, she joked, “unless my husband is dying of a heart attack, and even then I would think about it.” Funny.
I came across a video on youtube put up by a woman from Sweden who has alopecia areata. She has but together her story from pictures starting from 1987 when she was a child, though the diagnosis in 2003 all the way until today. I admire her strength, courage and acceptance. She’s beautiful with hair, she’s beautiful without. She looks so comfortable with herself and in her own skin. I really want to get to that place. It’s definitely a must watch video for any woman suffering with hair loss.
Most Pantene commercials are enough to bring any women suffering with hair loss to tears. Women with gorgeous long, thick soft hair tossing their heads while the hair perfectly cascades around them. However, recently Pantene has launched a new campaign called Pantene Beautiful Lengths. This new program encourages people to grow, cut and donate their hair to create real-hair wigs for women who’ve lost their hair due to cancer. Their video for the campaign is incredibly touching.
The responses to the video on youtube are mixed. Some people think it’s such a great idea and a moving video, while another person thinks it is wrong for Pantene to use cancer for product placement. I think that any endeavor towards building awareness to a cause and helping those in need is a worthwhile venture, regardless of what anyone thinks the motives are.
I recently read about this organization called “Bald Girls Do Lunch” after reading an article in the Desert News. Bald Girls Do Lunch is founded by Thea Chassin who has had alopecia universalis since 1997. Chassin lives in New York and for the past five years has been a support group leader for alopecia areata. She deals with women, men and children of all ages. From the beginning, Bald Girls Do Lunch was created as a non profit organization that was devoting all its resources to the emotional and practical needs of women with alopecia areata.
Their website states:
Bald Girls Do Lunch supports women with alopecia areata — an auto-immune skin condition which causes the partial or total loss of hair on the scalp, brows, lashes and body. We are a not-for-profit organization dedicated to improving the lives of women living with the challenges of this condition.
How do we help? We recognize that too many women are feeling very alone with this condition. We bring them together for small and intimate lunches where they can discuss with each other whatever’s on their minds.
• We hold workshops with wig makers to understand wig types , how they are made and which ones suit our lifestyles
• We hold classes with a master make-up artist
• We provide tips and guidance for learning how and when to discuss this condition with family, lovers and friends
This is such an amazing concept and organization. They have the following upcoming lunch locations
Pasadena, CA – Septemeber 9, 2007
New York Special Event – October 7, 2007
Scottsdale, AZ – October 13, 2007
I want to first write that I am not a fan of hair transplants for women, I personally
think that most women with androgenetic alopecia are NOT candidates for
this procedure. Having said that, I get emailed all the time from women looking
for a good hair transplant surgeon.
If you are deadset on having a consultation, please visit the International Alliance
of Hair Restoration Surgeons. The IAHRS (http://www.iahrs.org)
is an organization that selectively screens skilled and ethical hair transplant
surgeons. Read
my thoughts about hair transplants here.
Insurance companies don’t cover the cost of wigs, also known as hair prosthesis, when hair loss is caused by anything other than chemotherapy. And even then, not all insurance companies cover the cost of the hair prosthesis for chemotherapy related hair loss. Lisa Fayed, the cancer guide from about.com writes “If your insurance company does cover the cost of wig, you may need your doctor to write a letter or prescription that includes information as to why you need the wig, noting that it is not for cosmetic purposes, but for your emotional well-being. Request that your doctor prescribe a “hair prosthesis or cranial hair prosthesis”, not just a “wig”. Insurance companies are very particular of wording, and most will not cover a “wig”, but will cover a “hair prosthesis”, even though they are the same thing.
I stumbled across something online today that said that Tina Turner actually suffers with alopecia universalis. I’m not sure if thats true or not, as many African American women wear wigs and hair weaves. Most often I think it is for style, but who knows this could be why I have never actually have seen a picture of her without her wig. She always looks so fabulous, the wigs just add to her beauty.
