Monday, June 23, 2014

a future with hair?...

You may have heard the big news in the alopecia world this week.

A hairless 25 year old male was treated with a medication used for rheumatoid arthritis, and he experienced complete hair regrowth within a period of months!

Here's the article published by Yale.  
Here's the actual published article by the doctor.
Here's an interview with the doctor and the patient.

Encouraging stuff, right?

Yes.  Most definitely.

As this story is making its rounds through the media, it's also providing hope to those of us in the alopecia world who live with the psychological and social effects that come with it.  It's exciting to think about the future of alopecia treatments.  Since a scientist discovered the gene for alopecia just a couple of years ago, (which was a HUGE step!) lots of research, clinical trials, and progress have come in its wake.  It's also neat to think that Caroline's blood sample we sent in three years ago to the national alopecia registry can be helpful in continuing research towards a cure.

Good stuff!

But as crazy as this may sound, along with this encouraging study (which was only performed on one individual, let's remember, though there will be clinical trials beginning soon) comes a bag of mixed emotions for me personally.

It's not that I don't want there to be a cure.  Certainly I do.

But this drug isn't a cure.  It's a treatment.  A hopeful treatment!, but another treatment nonetheless, to potentially add to the accepted list of immunosuppressant steroid creams, injections, and pills that alopecia patients already have the option to endure.

I'm so thankful for the extremely strong and active foundation in the alopecia world, NAAF, and while they are encouraged by the study, here's their reaction:

While we remain hopeful, we wish to remind the alopecia areata community this is a preliminary study with the effects of the drug studied on only one individual.  It should be considered preliminary and not validated at this point, and remains to be further studied in clinical trials.  We encourage the researchers at Yale to pursue a clinical trial and are excited that a clinical trial with this drug will be starting at Columbia University this summer.

Doctors don't know alot about alopecia, and there's no predictability in the condition.  Hair can regrow and fall out whenever the immune system decides.  One pattern that doctors have learned is that the earlier you lose your hair, and the more extensive your hairloss, the less likely you are to experience any regrowth.  That may be particularly important to find in this study, because the patient lost his hair at age 20 (only 5 years ago), which made him more likely than someone like Caroline, for instance, to experience regrowth.

So I guess you could say I'm cautiously optimistic about the future.  I'm so curious to see what they'll find and what will happen in the years to come.

Meanwhile, can I just say I'm in the everyday trenches with alopecia?!  

I'm dealing with the deep insecurities it is digging within my daughter's heart.  

I'm staying up late by her bedside the night before day camp to practice what she's to say to someone who stares at her or asks about her baldness.  

In public, I'm Mama Bear, constantly scanning the scene around us, aware of the stares and reactions, and either I'm intentionally smiling back at you as your jaw drops when you see my kid, or if need be, I'm giving the stink-eye right back 'atcha.  I try to appear cool and collected when my Caroline is with me, but you better believe Mama Bear is always on high alert.  

Being a mother is a full time job.  I feel like alopecia adds an extra part-time job into the mix.

It's hard.  When I think about there being a pill or cream that could just instantly take all of that away, it would seem like a no brainer.  Right?

But in other ways, alopecia (and the journey to accept it) has been so richly rewarding.  Though others may see Caroline's baldness as a flaw and weakness, I can't believe I've come to see it now as a strength.  The world would see it as taking away from her beauty.  I see how it adds to it!  I'd have never asked for it, but Caroline wouldn't be who she is today without alopecia.  It's a part of HER now.  (You don't even know how crazy it is for me to say that.)  

I have grieved and mourned the loss of the daughter with hair.  I used to ask God to bring that girl back.  To bring her hair back.  Now that doesn't even cross my mind.  (We have lots more things to pray about than some silly hair regrowth! haha!)  

I was and still am prepared for a life with baldness.  So the thought of having hair again is...jolting, I guess.  It raises more questions for me and for us in the future, but thankfully Caroline is young and we don't have to make those difficult treatment decisions until she would be old enough and ready.

Within the alopecia world, there are different ways of handling the auto-immune condition. Some pursue treatments and some don't.  Some wear a wig and some don't.  Some fight it and some accept it.  Some hate it and some wouldn't want their hair back even if they could.  

God has brought me from such a far Point A (fighting and hating alopecia) all the way to the distant Point B (accepting and even embracing alopecia), and I know that regardless of what our future holds, (hair or no hair) He will be with us every step of the way.

"He preserves me so well that without the will of my heavenly Father, 
not a hair can fall from my head
indeed, all things must work together for my salvation."  
~Heidelberg Catechism, Question 1


  1. Well written and great advice. I started the Children's Alopecia Project 10 years ago because my then 5 year old daughter lost all her hair. A cure was never on the radar, self-esteem was. She is now 16 and still without hair and confident, beautiful and intelligent with a life of memories already because of CAP. We know the side effects are nasty but we are hopeful for a treatment where the treatment is not worse than the disease. Fingers crossed!!

  2. I've always said it, and I'll say it again. Caroline is beautiful without hair. I pray for God's will for her life, which is much more important. Whether with hair or without hair, may she always bring glory to His Holy Name. God bless my sweet Caroline!