Holding out Hope

10 May, 2012

She was sitting at a computer at school, working with her classmates on a project. One of her friends standing behind her gave her the startling news, “Hope, your hair…, its gone in the back…”

It is one thing to be a mid-40’s male whose mop is gradually thinning into obscurity, it is quite another when you are a young lady in the 5th grade with gorgeous tresses of hair. Hope and her mother Kate went to their family doctor to find out about the hair loss, which is called alopecia.

Alopecia areata is a common autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis).

-        National Alopecial Areata Foundation

What Hope heard from her doctor that day panicked her; she was warned that her hair could all fall out and that it probably wouldn’t grow back. “I thought, ‘Oh no! I am going to be that bald girl in the back of the classroom that no one wants to talk to.’”

Fortunately the hair loss and thinning stopped with the back of her head and then began to gradually grow back. By the start of her 6th grade year she once again had a full head of hair and went through the school year without any other problems. Hope and Kate had been working with doctors and naturopaths to determine the triggers to this autoimmune disease so they could avoid those allergens. She went on a gluten free diet, which seemed to work.

That next summer she went to a weeklong church camp that didn’t have any menu options. Hope thought she would be okay eating the camp food and then returning to her normal regimen at home. Unfortunately her body, which now wasn’t used to any gluten in her system, reacted almost immediately. During camp her hair started falling out in little clumps. She turned to her best friend and said, “Oh crap. It’s starting again.”

By the beginning of 7th grade she was attending school wearing a wig called a topper that makes a person’s hair look fuller. But as her hair continued to thin the wig would no longer stay in place. Hope went shopping for a full wig.

Synthetic wigs have their own hardships. They caused Hope’s scalp to itch and sweat and the wig was simply uncomfortable to wear for long periods of time. She much prefers wig she has made of real hair as it doesn’t give her the same reactions and she also can style the hair. The setback with a wig made of real hair is the cost, which is around $1500.

She received encouragement from others, including her classmates, but has found it difficult to relate to others who aren’t feeling this same loss. It is one thing to imagine losing your hair as a teenage girl; it is another to actually experience it. Some people’s attempts at cheering her up fell short – “At least you don’t have cancer,” and “At least you aren’t dying.”

But Hope’s reality is that she really loved her hair. It was her favorite feature of her body and the loss she has experienced is much more significant than it might be for someone else at a different time or stage in life. One of Hope’s desires is to go to Washington D.C.  this summer for a gathering of kids with alopecia. There is both a conference for parents as well as a camp for the teenagers. She believes this will be a great opportunity for her to connect with some other girls she can truly relate with in this specific area.

Hope doesn’t come across as a victim, nor is she hesitant to talk about her hair condition. One benefit she has found is that she gets to wear different wigs to match her moods and her outfits – even pink ones. She found that costume wigs are cheaper to purchase so she now has a nice little collection of them. Her bedroom has a shelf where she displays and can style her hair pieces.

She ran into a roadblock at her school when she asked the administration if she could sometimes wear a hat. Again, wearing a wig all day was uncomfortable and distracting to Hope. But the vice principal told her and Kate that hats are against the school’s dress code and that if they made an exception for Hope they would have to make one for everybody. (This writer doesn’t think the vice principal understands the word ‘exception’ at all, and it is with great restrain that I don’t publish this administrator’s name and the name of her school.) The next day Hope came to school without a wig. Fortunately most of her classmates were supportive of her. Unfortunately her head was cold. She has now switched schools to one that is more flexible in their dress code (and where the administrators actually have souls).

Hope has found benefits – she is overall healthier much in thanks to her diet, she has learned a lot about her own inner strength and courage, and she still can eat the frosting off the top of cupcakes.

And Hope has hope. She is very careful with her diet and continues to study how to help her body heal itself. She would love to have a buzz-cut length of hair by this summer, desiring that the patches will continue to fill in. Then next year she’d like to grow some bangs again and style her hair like her favorite singer, Morgan Wolf, the lead singer of the band A Life Set Apart.

When Hope posed for the pictures in this article she wasn’t hesitant to share the nakedness of her physical condition and at the same time express the fullness of her spirit. They are some of the most beautiful pictures this photographer has ever taken.

If you would like to donate to help send Hope and Kate to the Alopecia Areata Foundation conference and camp, please click here to go to the NAAP site. They have re-posted this story and made it possible to donate directly for Hope and Kate’s participation. We would like to raise at least $2500 to pay for the conference, travel, and expenses for them. Thank you!

Pinging is currently not allowed10 Responses

  1. khjns says:

    These pictures are so beautiful. Hope is such an amazing young woman, thank you for capturing her story :)

  2. Justin says:

    I recently had the pleasure of meeting Hope. She told me a funny anecdote about my son, whom she goes to school with, and generally brightened my day. The school that she left was the loser in this situation.

  3. leah says:

    Hope. You are aptly named. Reading this story gave me hope. I also struggle with an autoimmune disorder and while my symptoms differ from yours I am familiar with the diet changes to heal the body! You are wise beyond your years and amaze me! Love ya! Enzo's mom Leah!

  4. stu says:

    Kate, you are absolutely gorgeous! I have been where you now are. It was much easier for me as a man, although my wedding pictures show a guy with a very patchy head of hair and it was difficult initially as I went through my business life. Fortunately I have a nice shaped head and elected to just shave it all off. Now I don't have to as it all progressed to universalis. However, like Miss Delaware, Kayla Martell, who also has alopecia, you have a stunning smile, a beautifully shaped head and eyes that show your true inner beauty. I wish you all the best as you wrestle with and embrace your alopecia. You are gorgeous!

  5. Kate says:

    Love this story and all the people in it!! <3

  6. Terrance Norton says:

    I can really relate to Hope's situation because I was a Cosmetologist for over 20 yrs. I have worked with clients with Alepecia when I worked at this place in Phoenix called Hair Replacement Systems. (HRS). It is devastating to a female when they loose their hair. To a teen it has more impact. I reposted this blog on my Twitter and Facebook pages.
    May the money come in and Hope will be able to attend the camp so she can find like minded people with the same problem.

  7. Bill Burns says:

    She's a beautiful girl, inside and out. God bless her!

  8. Amy Miller says:

    We're only 1 hour from DC. If we can help with lodging (or anything else, let us know.

  9. Ayla Rogge says:

    Hope, I know we didn't know each other great, but you inspired me so much, my hair went to my shoulder blades and I was afraid to cut it off, but I thought of how beautiful and brave you are, and I cut almost all my hair off.
    I really miss having you at South. But I think its great that you're making a change for other girls and teens and becoming a leader of such a great thing, thanks to you I am a better person that thinks in a more positive way.
    Love you girl, I miss you, and have fun in DC! – Ayla M.

  10. Dena Lynn Brehm says:

    Oh … and I should have mentioned … 3 months after switching to Yasmin (from Loestrin/Microgestin), my hair loss (which was coming out by the HANDful) stopped … and new growth started … I now no longer have to wear wigs … and my hair is restored!

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