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Rob Swierski has Alopecia Universalis

How We BEAT Alopecia

Rob Swierski has Alopecia UniversalisThis 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 shooterdirect, 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.

Robert Swierski is the Executive Director of Global Alopecia MissionRob Swierski during Alopecia Universalis FlareCan 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.

11 Responses to How We BEAT Alopecia

  1. I read your piece this morning, and as a 29-year veteran of living with alopecia, I would like to take a moment to offer you my perspective.

    I use the word veteran literally and mean it.  I have been fighting a war against alopecia from the moment I was diagnosed at age 4, and have waged brutal battles against countless doctors, classmates, friends, family members, and significant others.  I have hated myself and my looks for more years than I care to count, and I distrust anybody who dares to think that I am beautiful in spite of alopecia.  I have prayed daily for 10,592 days (as of this morning) for a treatment that won’t reverse itself the moment I stop taking it and a cure so I don’t have to take anything else, and a vaccine to prevent anyone else from getting alopecia.  I have blamed genetics, the environment, the food I eat, the hole in the ozone layer, living a wicked life, the sins of my parents and grandparents, you name it — I’ve done all of that and more in 29 years.  I have educated, inspired, demonized, researched, and hoped for 10,592 days and will do all of this and more for the next 10,592 days if that is what it takes to get a cure as well.

    I also, with the passage of time, come to the conclusion that unless I have Bill Gates’s money or the influence of every lobbyist in Washington, I am not likely to see a cure for alopecia in my lifetime.  So yes, I have learned to accept how I look, because guess what?  It’s not likely to change anytime soon.  Do I think bald is beautiful?  Absolutely I do.  I love the fact that in hellishly hot, humid Tennessee summers like the one we’re having now, I don’t have to worry about my hair making me any hotter than I already am.  I love the fact that it takes me less than 20 minutes to get ready for work, makeup included, and be out the door.  I love the fact that I save more money per month on NOT having to buy hair care products or meds that don’t work.  And I LOVE that nowadays I am seeing more and more people modeling in fashion magazines and on TV and movies that are rocking the bald look.  Most of all, thanks to NAAF and their conference as well as other support sites, I take comfort in the fact that I am NOT alone.

    Gathering at a place like the NAAF Conference is much, MUCH more than just going to give NAAF money on a “Bridge to Nowhere” research goose chase.  For many of the attendees, especially the children, it is the only chance during the year to let down the walls we erect to protect our feelings, to shed the feelings of isolation and ostracism that we experience daily as we try to fit into a hirsute world.  It is also probably the only time that a great number of the attendees will even SEE, let alone speak to, another person with alopecia.  And to have that experience alone is worth paying any price.

    Do I feel that the alopecian community should be more vociferous and put our money where our mouth is and demand progress?  Of course I do, and I don’t think that anyone living with alopecia would disagree with me on that.  However, I also think that it is just as important that we do spread the message about awareness, acceptance, and support – because whether your hair grows back in a day, week, month, year, decade, century, millennium, or never, you HAVE to have confidence in yourself in order to take over the world and get it to hear what you have to say.  Make no mistake:  I WILL NEVER, EVER, GIVE UP THE FIGHT FOR A CURE FOR ALOPECIA.  I have subjected my body to drug after drug after drug and endured the  heartache of having my hair grow back only for it to fall out again.  I don’t remember much of my life before alopecia, but you better believe I remember every day I have lived after my diagnosis.  I even welcome more information about your Pro-Immune that you used that triggered your hair growth and would love to be more involved with the Global Alopecia Mission.  However, because human beings all adapt to different stimuli in different ways, I would suggest that you use be more cognizant of that sensitivity.  Thank you.

  2. Terri says:

    You do voice alot of valid issues concerning alopecia research and as one that was first diagnosed with alopecia 28 years ago (the tender age of 8)  It would be wonderful to have new research done and continuously sought after.  As for myself, I sit on both sides of the fence regarding my baldness.  And I can comfortably sit both sides.  As I would like to see a cure but I also will be fine if it never happens.  After doing   28 years of painful and unsuccessful treatments I am no longer going to be a guinea pig.  As far a genetic connection to alopecia being found,  has anyone ever thought that maybe this genetic “change” to our bodies was suppose to happen on the evolution chain??!!!!  And its peoples’ fear of change that make us sit up and yell.  We have the technology now to recognize the genetic changes in our bodies, but has anyone ever stopped to think that maybe some changes  were suppose to happened.  As a species we will always evolve ….. what those changes will be only the future knows.  Like I said before tho, a cure would be wonderful.  But even better would be the research that goes along with it.

    • Bob Nguma says:

      Very well put. We are the onlypeople who know what we have undergone. All what we need to do is to continue to:
      Be Bold and Be Brave.

      HAVE  A  NICE  DAY AND A BETTER NIGHT

  3. Great piece that really expresses your frustration over the lack of research progress in relation to curing alopecia. I personally believe that support and awareness are key to inspiring better research progress, as this will lead to more scientists who are authentically working for a solution (rather than simply working for pay).  

    • Rob says:

      Douglas, you know, my father gave me a piece of advice when i was a very young boy. He said, “son, always remember: What you don’t ask for, don’t expect to get.” I can’t disagree with you more. If the alopecia community wants more and better research toward a cure, they need to insist that that is where their money is being spent and hold those working on it accountable. I’m still scratching my head trying to figure out how this catch phrase ‘support and awareness’ coupled with smiling faces talking about how alopecia knits them together as one big family is suppose to inspire anyone on the outside to do ANYTHING. Where is the logic in that? Is that how you sell wigs – by telling people they really don’t need them? And there is certainly nothing wrong with a scientist authentically working for authentic pay; they have families to feed too. Money is a great motivator. I think the real problem is people that think there is, what i like to call, “a cure fairy” silently working in the background to one day rescue the world from alopecia while they sit and do nothing. Sorry to disagree so strongly Douglas, but i think you really need to re-evaluate your thinking and then roll up your sleeves.

      • Douglas Crawford says:

        Perhaps in the context of my 2-sentence comment, I was misunderstood. As with any sickness, support and awareness was to mean support for a cure and awareness of its existence. In no way did I mention acceptance; meaning, accepting that alopecia is here to stay. Whether individuals accept living with alopecia is their choice..I myself do not have alopecia so it’s not my territory to speak like I understand its hardships. However, as a supporter in the fight for a cure I am aware that alopecia faces more rejection than acceptance…and like all fights, there are those who support and those who fight. Fighters like yourself bring fervor into the equation that supporters who are aware of the problem could not themselves have generated, and with that energy individuals like myself see greater reason to become involved with the cause. As per a ‘cure fairy,’ I hope you’re not implying that I believe in any such thing; although at the same time, individuals cannot expect money alone to magically draw up the cure to a complex problem.

        Ultimately I understand that you are angry, for due cause, but I do not understand why you refute support and awareness. Perhaps it was the brevity of my comment. Although the two are not the solution to the problem, they are still a functional part of the solution…for otherwise little external aid could be drawn forth from the public.

        • Rob says:

          Spare me the ‘angry’ spin and your pseudo-eloquence….such a waste of time. How about we speak in simple English. What you initially said sounded like you just fell out of the politically-correct Alopecia cookie cutter with all your support, awareness, scientist working on high ideals, etc talk. I’ll try to say it AGAIN clearly so that you understand: support is not going to come from anyone, let alone those on the outside, if everyone that has alopecia advertises how happy, fulfilled and how they’ve learned the deeper meaning of life because of their disease. I had alopecia universalis for 20 years and i wouldn’t give one thin dime ‘for research’ to anyone telling me that they are thrilled with their condition. Why should I? 

  4. Traceym0814 says:

    m name is tracey martinez n im 26 years old n i have had alopecia since i was 7 ears old n i have tried to run away from it my whole life n now i know what i wanna do n thats to b more involved with this cause i have 2 kids n i wanna show they that its ok to be different…….i have dealt with battles with school n the bullying i would like to show people that dont have this that we are just like every1 else………sienc my kids started school 2 years ago i have not left the house without my wig because i didnt want them to live with all there friends asking questions n getting made fun of because of me…………if anybody knows how to get more involved please let me know my facebook is traceym0814@optonline.net n my aim is candylips0814

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