Thursday, February 10, 2011

10 things about aal-o-PEESH-a...

Meet my friend, Annie. She's about a year younger than me. She's got alopecia totalis just like me. She lives in Tulsa, OK, and though we haven't met yet, our mommies are thankful they have been in contact with each other for many months. Some day we plan to meet!

Annie and I think it's pretty important that you all know a few facts about us and about alopecia (pronounced "aal-o-PEESH-a").

1. First, we are NOT sick. Only our hair is sick. For whatever reason, our body has decided it's allergic to its own hair follicles! Isn't that silly?

2. LOTS of people have alopecia. Did you know it's the most common autoimmune disorder? About 2% of the population has it. Of those 2%, most have what is called alopecia areata.

3. There are 3 types of alopecia:
  • Alopecia areata- is by FAR the most common type of alopecia. If you know someone with alopecia, this is probably what they've got. People of any age suddenly lose 1 to several small patches of hair. (see below)

  • Alopecia totalis- is much more rare. (That's what Annie & I have!) It's a total loss of all scalp hair, but we have other hair elsewhere (eyelashes, eyebrows, arm & leg hair, etc.)
  • Alopecia universalis- is the most rare form of alopecia. It is when someone has NO body hair whatsoever.
4. No one knows what actually causes alopecia. (well, except for alopecia as a result of chemotherapy or something like a vitamin/nutritional deficiency where an exact cause is known) There IS a genetic factor, but there doesn't have to be. No alopecia in my family history that we know of.

5. Currently, there's some exciting genetic research happening to learn more about this autoimmune condition. As we've shared before, geneticists just discovered the alopecia gene, and to their surprise it had the most in common with the genes for: celiac disease, diabetes 1, & rheumatoid arthritis.

6. The course of alopecia looks different in EVERYONE. Some people lose patches of hair that grow back, only to fall out again. Some people lose their hair and never get it back again. There is no official predictor of alopecia-- your hair follicles can regrow hair at any time throughout life, even after years and years without it! However, research DOES indicate that prognosis tends to be worse 1) the earlier in life you get it and 2) the extent of the hair loss. (that's what Annie & I have working against us in hopes of future hair regrowth...)

7. People with alopecia don't need a special diet or any special accomodations. They are healthy & active, fully normal people- just without hair! The most difficult part of alopecia is the emotional/social aspect. (which is no small challenge, for sure!) Many people with alopecia opt to wear wigs, scarves, or hats to blend in. (although after a time, many of them opt OUT of the need to "cover up" and find enjoyment in being who they are. This will be a "fun" one to navigate throughout life, I'm sure...)

8. Treatments for people with alopecia are generally things like steroid creams & steroid injections into the scalp. These treatments are moderately successful for smaller patches of hairloss, but not very effective for alopecia totalis, and most aren't so safe for young kiddos like me.

9. The rate of hairloss is different for everyone, too. It can be sudden or slow. It can fall out in round patches or in a diffused pattern. (like mine did) My friend, Annie, lost her hair pretty quickly. (75% of it over a period of days, I believe) Mine fell out slowly, over the course of 10 months.

This picture was after a month of hair loss.

Then a few months later.

Then later.

And here I am now, just as beautiful as ever.

10. And here's one last little thing you should know about us gals (& guys) with alopecia...

we have the BIGGEST hearts. :)
Posted by Picasa


  1. Oh Caroline, you are so beautiful! Nanny & Papa think you don't really need hair. It can be just a bother. I'm glad you found a little friend, Annie, to help you through the days ahead (along with the support of your family and friends. We love you.

  2. She's beautiful, that's for sure! I know it's been a hard road and we will still pray for wisdom for you guys! Love your blog, Amy!

  3. What a helpful and heart-filled explanation. What a blessing that Caroline has YOU for a Mommy and Marc for her Daddy! These pictures can barely hold her smiles!! I miss you! Love,

  4. Love those owl pajamas Caroline. You will probably be able to wear those at least another year.

    Aunt Sharon