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 regrows...it 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 above...you 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 these first two stages of Queen Alopecia's alopecia shown in the pictures above...it 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.