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I am not a doctor...Please do not mistake anything you read here (on Autoimmune Island) for medical advice.
Decisions regarding you or your child's health care should be made only with the assistance of your doctor and/or your health care specialists.

Saturday, March 20, 2010

Alopecia Are...whata???

Most of my blogging so far has been about Type 1 Diabetes, but there is another autoimmune disease that has decided to show it's face in our family....

In June of 2009, my oldest daughter - "Queen Alopecia", was diagnosed with Alopecia Areata.  Most people have no idea what those words mean until we inform them.  Alopecia Areata is an autoimmune disease.  My daughter's own immune system, which is supposed to fight off virus and bacteria, is mistakenly attacking her hair follicles.  The hair follicles are the structures that produce hair growth.  When these follicles are attacked, it leads to hair loss.  Hair can be lost not only on the scalp, but on other parts of the body too.  The stem cells that provide the follicles with new cells are not affected, so there is always the potential for new hair growth.  If hair could all fall out again.  Alopecia is different for all people.  Some people have hair regrowth while other people may not...that is what makes this disease so unpredicatable.  There are three main types of Alopecia.

  • Alopecia Areata: described as having patches of hair loss anywhere.  At first, Queen Alopecia was diagnosed with Alopecia Areata when we noticed two quarter size bald patches on each side of her head.  We could easily cover these spots with her own hair.  If you look at the picture can't see the bald patches...we were able to hide it very well.
  • Alopecia Totalis: described as total hair loss of the scalp.
  • Alopecia Universalis: decribed as total hair loss of scalp and body; including the eyebrows, eyelashes, underarm, etc.  Queen Alopecia eventually developed this rarest form of Alopecia.
At first, there were only two spots on each side of Queen Alopecia's head, but slowly....these spots began to grow bigger and then there were more spots that started to develop and these spots gradually got bigger, and bigger, and bigger until they all just started to connect with one another.  The photos below will show the progress of Alopecia Universalis...

At these first  two stages of Queen Alopecia's alopecia shown in the pictures mainly affected her left side and we could still cover it with wide head bands. We used 3" wide head bands and most people didn't realize that Queen Alopecia was losing her hair.

At this point...the patches started to get bigger and gradually connected with each other.  It was at this stage that I also noticed that her eyebrows and eyelashes were thining.  We tried many topical cremes to get her hair to regrow.  I even sent away for a topical cream, shampoo, and nighttime oil (called Calosol) from England that didn't produce any results.  We then started to go to a dermatologist who prescribed "Elidel".  We used that for a while and then I found a case study where Alopeicans used Elidel and not one person had hair regrowth.  We decided to stop this cream and give steriod injections a try.  We went to our appointment and the first time she got injections, she was so scared.  We used emla cream to help numb her scalp.  Thank goodness for this cream....she only felt about six-eight shots, but she must have been given 100 or more shots in her scalp.  She was such a tropper!  We were told that we should see hair regrowth within three-four weeks, but was also told that it may or may not work.....

Queen Alopecia is losing her bangs and it is now impossible to cover the balding with headbands so at this point she is wearing hats to school.  She is worried about losing all of her hair, but she fears losing friends more.  At this time she doesn't want to tell her friends about it.  She said that she wants to make friends first and then tell them all about her Alopecia.  Then she will know if they are truly her friends.  If they are, they will not care whether or not she has hair.  I'm so proud of her for going through this emotional time and having such a positive attitude.  I'm hoping that her self-confidence continues to grow.
We found this picture on her grandparents computer.  It is a drawing that Queen Alopecia created about her hair loss.  Her classmates are wondering if she has cancer and it is at this time that we decided to send a parent letter home informing parents about Queen Alopecia's alopecia and how to answer any questions that their son or daughter may ask.  I also sent the books "The Girl with No Hair" and "Princess Alopecia" to school for all the teachers to read to their students to raise awareness about Alopecia Areata and to understand what Queen Alopecia is and will be going through.

At this point, we decided to give one more round of steroid injections a try.  We wanted to make sure that we tried everything....we wanted to make sure that we didn't leave a page unturned.  That is what parents do right?  We were going to do everything possible to help our daughter.  

Queen Alopecia with Alopecia Universalis...Total scalp and body hair loss.  She amazes me.  The second round of steroid injections didn't produce any hair regrowth and at this point all her eyebrows and eyelashes are gone.  We decided as a family that we did not want to continue with the injections.  She now wears a wig, but at times it can be uncomforable, but she loves being able to wear one when she wants to.  She doens't feel comfortable, at this time, to be out in public without wearing some sort of head covering (the Buffs, the hats, and her wig). 

This is Queen Alopecia wearing her new wig for the first time...she loves that it "looks real"...
I just wish I was better at styling it. 

Besides having alopecia universalis, Queen Alopecia is healthy.  We had blood work done thinking maybe something else was causing her to lose her hair, but everything came back normal.  She is healthy, but the loss of eyelashes and eyebrows and hair in the nose and ears can make her more vulnerable to dust, germs, and foreign particles entering the eyes, nose, and ears.  I'm a member of Alopecia World and its good to talk to other parents whose children have alopecia and who are going through the same kind of problems and frustrations.  I've learned more about it, learned about other treatments that may be in trail phases, and have learned about products out there that we will probably be using when Queen Alopecia gets older.  I think it's really tough for people living with alopecia especially in a culture that views hair as a sign of youth and good health.  We are happy that Queen Alopecia is not going through any physical pain, but it is the social and emotional pain that we worry about.  Will she continue to be strong in her "teen years"?  Will she continue to have self-confidence and stick up for herself? ..........I hope so.


  1. Thank you for this post. I feel so much better informed. Gwen is an amazing girl! Her maturity in handling the toughest of situations is amazing! She is beautiful with her wig and without. (And wow! Her wig looks like her real hair!)

    ((Hugs)) to Gwen and your awesome family!

  2. Wow...I really appreciate this post. The pictures really helped me understand the phases that you guys have been through.

    Gwen is a beautiful girl. I can imagine that, as her mother, this dx was (is!) probably very difficult for you to accept...but you have done remarkably well...providing every possible treatment, helping her to embrace her individuality, and advocating for her at school.

    Your girls are beautiful. Your family is wonderful. Please let us know if there's every anything we can do as a community of supportive mothers to assist you with this part of your jouney.

  3. Hi Ronda,

    Thank you for this wonderful post. It is a small world. My best friend from college has a thirteen year old son who was diagnosed with alopecia universalis when he was seven. I think kids who face these challenges are wise well beyond their years. They are unique beautiful souls. Thank you for sharing your daughter's story. I love the title of your blogspot. I look forward to getting to know you better.


  4. Ronda....thanks so much for this! I'm so stinkin' proud of your family! Diabetes and alopecia make for one amazing family if you ask me!

    love you guys!

  5. Ronda...WOW...great post. I really feel you showed the stages of the progression of what your family and Gwen went through beautifully.

    Your family is absolutely beautiful and you are doing a wonderful job...keep up the good work and support and hopefully that will help Gwen through some of those tricky teen years. She has a great foundation!

    xoxo...Sorry for my delay on commenting. For some reason I cannot see when you write a new post on my blog roll.

  6. I think the hardest thing as a parent is to watch your kids hurt and worry so much for them. It sounds like you have done an amazing job caring for both of your girls. What a sweet and beautiful girl you have in Gwen.

  7. I am so grateful I found you.

    I worry that the small spots we have now can spread or turn into totalis or universalis as well, but you have shown such strength, and courage. You and your GORGEOUS! daughter.

    Thank you.

    (Totally crying again btw).

  8. Thank you for this post. It might be weird that I am commenting 6 years in the future but even now this post melts my heart. My name is Gwen, I find it funny how on here I am known as Queen Alopecia. When I search that on google my picture pops up like I'm some celebrity. I am now 15 years old and I still have Alopecia but am doing great. I am still emotionally strong. My hair as growth back almost completely with only a few spots on the back of my head. I have true friends who don't care the slightest about my Alopecia. When I lost my hair I did lose quite a few friends and people from time to time will ask me about cancer or why I'm wearing a wig but it doesn't matter to me. I am doing great in my "teen years". Thank you, mom, for making this post to inform others about my condition. I love you ��

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