How We BEAT AlopeciaThis post is dedicated to my new friend in Indiana and her daughter who just started losing her beautiful hair at age 6. They reminded me again that there is nothing worthy in voluntarily submitting yourself to the sickness called alopecia.
It has been suggested many times in the past that I can be a bit too blunt at times. My friends are kinder about describing me, using terms like: straight shooter, direct, or doesn’t beat around the bush, but for many people ruffling feathers is not welcome. But sometimes though there is just no other way to say something than to say it. Still, people don’t generally like to have cold water splashed on their face, especially when their in the middle of a nap.
Well, unfortunately for those folks, this is one of those cold-water-in-the-face moments. I’ve already resigned myself to the fact that I am probably going to lose some friends today, so I will offer my apology in advance to those who disagree with me. Hopefully, we can just agree to disagree, and they will understand that I firmly believe in my mission and that mission is to beat Alopecia! I’m tired of the same talk I’ve heard for 20 years.
I want everyone who has an interest in this to look around at the current state of alopecia and tell me what you see. What I see is a completely lopsided approach to a problem. Everywhere you turn it’s about support, acceptance and awareness. Wait, I forgot to add: support, acceptance and awareness to that list. It reminds me of an old Wendy’s commercial: “Where’s the beef?” I’m tired of a big fluffy bun and no meat. I want the BEEF! Where is the research? Where is the action? Where is the vision and the resolve to find a treatment and a cure?
The truth is, not much has changed in the alopecia world since I first got it in back 1993. That’s a very sad statement. I really believe I’m not the only one that feels that way….
Before you go any further, I would like to set the tone and stake out my position with a favorite Chinese proverb of mine:
“Man who said, ‘It cannot be done,’ should not interrupt man who is doing it.”
So with that said, it’s on to my piece:
I would like to ask everybody that developed Alopecia when they were old enough to remember having hair to remember back to what it first felt like. Try to recall that moment when you finally realized it wasn’t just some freak event or temporary condition that would pass like the flu. Remember when you realized that everything about the way you visualized yourself and the way other people would see you was going, going, gone; that you were entering unchartered territory.
If you’re anything like me (I was 24 when Alopecia descended) or like the people that I talk to everyday that have just been diagnosed or have a child that’s just been diagnosed, it’s a mind-bending experience. It’s tragic and surreal all rolled into one. But you know, most people still haven’t even heard of it: “alo-what?” they say; and the doctors are hardly any better. If they even know what they are looking at, they too often are uniformed. Some still tell you need to calm down and relax – that it’s from stress. (Of course that sort of brilliance fades fast in the case of an 8 month old baby?) And then there’s the “it’s just cosmetic…be thankful that you don’t have real health problems” gang. Gosh, when the doctor told me that, I started jumping for joy, telling everyone I met how thankful I was. Yeah right!
So now try to remember how Alopecia turned your life upside down. Remember looking in the mirror or shower and realizing that your hair was just disappearing before your eyes – sometimes a little at a time and sometimes in clumps. You just don’t understand the role your hair plays. How can something that is literally a part of you; that you have come to depend on, just decide to up and leave you for no reason? Why you? And as you walk around trying to figure it out, you see all those people out there taking their hair, eyebrows, lashes, beards for granted. After I developed universalis I never gave up believing that there had to be a way to fix whatever was wrong with my body. If my body would still grow even a wisp of hair anywhere, then there had to be a way. And there is.
Can you recall how desperately you wanted your hair back? (And here’s where I can already hear the groaning from the bald-is-beautiful crowd.) There is absolutely nothing wrong with wanting your hair back. It’s not superficial or vain to want to look and BE well. Our outward appearance is an indicator to both us and others of our general state of health. It’s no different than having a mouth full of rotten teeth. Is there anyone who would seriously argue that a person is somehow superficial because they were uncomfortable parading their rotten teeth around? Imagine smiling like the Cheshire Cat with a mouth full of rotten teeth. The bottom line is: there was a time for each of us when we just wouldn’t concede….when giving up just wasn’t an option, because we wanted to be well again.
That is the place we all need to return to together. We need to get out from under all of the well-intended propaganda that tells us there’s nothing that can be done and that we must just accept it, and while we’re at it we have to embrace our sickness as well. We must stop convincing our children that they are incurable and hopeless. We need to take a long hard look at where we are and decide where we want to go; because people, if it’s treatment or a cure you want, the boat we’re on isn’t taking us there!
So even if you have been sucked deep into the alopecia spin machine and spit out convinced that you are incurable and that your new higher purpose in life is to parade around celebrating your plight, I suggest you reconsider. Nobody starts out embracing their baldness. Abandon that cult and instead apply your valuable time, energy and resources by joining with us and marching forward to an effective treatment and cure? And while you’re at it you can tell all of these silly bald-fetish people that have slipped into the alopecia ranks that there is big difference between intentionally shaving your head because you think its ‘cool’ and looking like you’ve been through extensive chemo and had a wax job on top of it due to alopecia.
I have to ask when is the last time you saw a group of chronically ill, heart-diseased people gathering in a some CA city to celebrate and embrace the fact that they are sickly and that their heart may give out at any moment. Perhaps I am dramatizing a bit, but wouldn’t it be so much better to instead be celebrating a successful treatment or an outright cure?
We need to reject the message that we have been getting from alopecia high command that there is no point in fighting, trying, or believing that we can find an answer now. Though I must admit, that at the rate “they” are going, there really is no reason to expect anything anytime soon. For instance, what is the NAAF really doing for research? I try to keep abreast of the NAAF’s fan page and often times see some newly diagnosed case of alopecia post on it. They are troubled, depressed and looking for answers, wondering what to expect next. Joe over there likes to tell them to hold on because they have exciting research going on over at the NAAF with Dr Christiano that may result in treatment and answers. All I can say about that is that he must have inside information because I don’t see anything going on over at the NAAF when I look at their website under research. What I do see is the same exact June 30, 2010 press release recycled five different times heralding a breakthrough by Dr Christiano and Columbia University researchers who “have found eight different genes that contribute to alopecia areata, one of which has a possible role in the onset of the disease.” Did you read what I just quoted: EIGHT different genes that CONTRIBUTE? That doesn’t even mean exclusively. For all we and they know, there could be fifty more. And then ONE that has a POSSIBLE role? Did you catch that? Possible! So what did they really determine? It seems to me it’s kind of like looking into a packed restaurant and making the announcement that you’ve figured out someone inside is eating food – not very impressive!
The press release then continues with a bunch of lightweight canned filler straight from one of their brochures and then wraps up with the earth-shattering promise that…..get this: the “next step is to replicate this study in future research.” Oh my goodness, I just can’t contain my excitement. That’s after 13 years of funding Dr. Christiano’s work, according to their site. At that rate I suppose we can expect to have more great news in 2024; perhaps a couple more “possible” genes identified. Well I’m sorry, I won’t hold my breath.
The NAAF also says it’s talking with pharmaceutical manufacturers to see who might be interested in doing trials for alopecia. Now doesn’t that sound very promising? Problem is, from the studies I’ve looked over, the only time there is any pharmaceutical trials for alopecia is when a drug maker is trying to place a drug they already have that happened to coincidentally show some possible potential for immune suppression or hair growth. What I’m trying to say is there is no real substantial and independent alopecia-focus research going on. So if you waiting on the status quo, I think you’re going to be waiting a very long time.
Interestingly, the first place that I called when I experienced my incredibly rapid re-growth was NAAF’s research people. I explained that I was Universalis for 19 years and that I had rapidly recovered from not only the alopecia but from my peripheral immunological issues as well and that I was hoping to share my experience because it might help. I never received a call back from anyone. Of course, I understand there are just so many universalis cases running around that have complete recovery in 43 days so why bother talking to me? (For those that are unaware, I was being very sarcastic.) A fairly exhaustive search of the web tells me there are no specifically documented cases of recovery like mine that I could find. Now in my opinion, it makes great sense to look at the genetic cause of alopecia, but isn’t it at least equally, if not more profitable to dig deep into those cases of recovery in order to look for immediate treatments and answers. But no one is doing that. That’s why they say: “necessity is the mother of invention” and that is how Global Alopecia Mission began. They’re all too busy feeding their support/education model to focus real energy and funds on the bigger picture…so someone has to change that.
So to wind things up, it seems to me that there are three options available to my brothers and sisters in the alopecia community: 1) do nothing at all and just wait to see what other people do; 2) keep funding the status quo and its lackluster research initiatives and in the meanwhile start another support group (one that teaches the next generation of alopecia kids that theirs is a hopeless cause; that they just need to learn to ACCEPT their lot in life and be overcomers); or 3) grab onto some hope, stoke the fire inside and join with Global Alopecia Mission and anyone with a like mindset to change things.
Redirect some of the countless hours and dollars that alopecia has stolen in little and big ways and become a partner with Global Alopecia Mission to beat alopecia. VOLUNTEER however you can and DONATE to make a difference!
Let’s push to get 10,000 global members. There is undeniable strength in numbers. The more members we have, the more clout we can wield in every way. In addition to our pro-mmune trials, we want to immediately expand into unbiased independent alopecia research so that we can nail alopecia to the wall like a trophy. We can do that if the global alopecia family takes to the street and makes it happen.
One important function that we at Global Alopecia Mission are looking to fill is territory chiefs in different states/countries. Right now we have approximately 17 countries with some minor form of representation in our organization. We need to expand to more countries and, within each country/state, expand our membership. So please contact us if you think you might be interested and want more information about what the position entails.
As I close, I want to remind everyone of something; I no longer have alopecia universalis. As a matter fact, my picture up top with the beard serves as a reminder that I could have taken my prommune and walked off into my sunset and never looked back. Or perhaps I could have started hawking it on the web for $500 for a couple months supply. But I didn’t do either. Instead, I chose to return to my people – my alopecia family – with a hopeful message that a treatment and cure is at hand right now if we want it.
So if after reading this, you haven’t decided to put me in the ‘enemy’ column, then I urge you to get involved and join our mission to beat alopecia. Stop talking and start acting. Together we can win now!! I know it.