Saturday, September 5, 2015

UCSF

Things in Alopecia world went downhill quickly around here. In a span of about 2 months, Charlotte went from having enough hair to braid, to essentially bald. I was incredibly resistant, but eventually I accepted the status of her hair and shaved the few stringy strands she had left. I'll admit, it looks a lot better than it did.
This last week, we had an incredible opportunity to meet with one of the leading physicians on AA in the country at UCSF. We waited over 2 months for the appointment, and needless to say, I was a little excited. The doctor was very nice and answered all of our questions, but unfortunately had no new or miraculous ideas for us. She encouraged us to stop treating Charlotte (which we did 2 months ago) and told us that there is nothing we can do. Bummer. The only way someone with AA's hair will grow back and stay is if their own body decides to grow it back. So, while the medications will force hair growth, as soon as we stop the medication, the hair will always fall out.
In a sense, I feel like this appointment was the final chapter in this part of her story. I feel sufficient closure. We have officially exhausted every option of treatment and I feel comfortable and confident that it is time to move forward with our lives, accepting that for the foreseeable future Charlotte will not have hair.

I have had a lot of people ask me, "What can I do?" Here are some ideas, based on my experience so far:

* Talk to me. I know it's not socially normal to ask someone, "what's wrong with you kid?" But it is so painful to hear of everyone talking about her when I'm not around. I understand the desire to be considerate, but I'm telling you, it is a lot less painful when someone comes directly to me and asks what's going on. I have had so many people come to me and say, "so and so was asking what was wrong with Charlotte, what should I tell them?" If anyone asks you, send them to me! We are happy to answer any questions and we love to be open and upfront about it. We never want Charlotte to feel like we are embarrassed by her, or need to whisper around her.

*Donate your hair in her honor! She has received a beautiful wig from and organization called "Children with Hairloss." She plays with it at home right now, we aren't ready to let her wear it out yet, but the organization is incredible, was so loving and supportive. They sent her wig, hats, hair products, etc. You can put her name on your donation card.

* Give her a hat, headband, scarf, etc.

*Just treat her like a normal kid! She doesn't notice she is the only kid without hair, so neither should we! She is a happy, healthy, energetic little girl; let's treat her like one!

Celebrating her new haircut with some ice cream!



No comments:

Post a Comment