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Rob Swierski has Alopecia Universalis

Something Strange in Alopecia World

Rob Swierski has Alopecia Universalis

By Robert Swierski

 

 

I had alopecia universalis for 19 years. When it struck, my life changed virtually overnight. At first I really couldn’t get my arms around the whole thing. For some reason I really did think it was going to pass quickly. I guess they would call that denial. Eventually and reluctantly, I accepted the fact that my life – at least a huge part of it – was no longer the same. Being in my early twenties probably wasn’t the best time for alopecia to decide to pay me a visit. Lots of things about that age made it difficult…not that I think there is any ‘good’ age or time for alopecia to come calling. Oh how I wished at the time I could have just slammed the door in its face and told it to become someone else’s burden. I didn’t want it then for me, and I don’t want it now for anyone else.

For those that don’t already know me, I will make my position on alopecia crystal clear: I think alopecia should go to hell and stay there – plain and simple. It’s an illness that I want to see cured! And for those people within the alopecia community that don’t see it as an illness, I have a slightly more diplomatic way of addressing them: “please go see someone about that.”

The average life has enough crosses to bear that we just can’t escape; alopecia shouldn’t be accepted as one of them. I would love nothing more than to put alopecia down for good. If I can play even a small part in bringing that to pass, I will be thrilled. I think that MOST people agree with me on this point. If they, or their child, suffer from alopecia, they simply want it gone; they want a cure. They don’t want to reinvent or martyr themselves for alopecia. They don’t want to become ambassadors, or motivational speakers or lunch doers. They have regular jobs and lives they want to live, without alopecia being a consideration.

Now of course there are those human anomalies out there. (And I do think that is the ideal word to describe them. The dictionary defines an anomaly as an abnormality or deviation, or when the resulting output is inexplicable). It’s not too hard to find them. As a matter of fact I could name 15 right off the top of my head; people who have created a whole new reality for themselves and are trying their darnedest to convince unsuspecting passers-by to step inside. Contrary to their ultra altruistic marquees though, I suspect there is more at work with these people. I would guess that some of them relish their role as bigger fish in their new littler alopecia pond. It’s become like a cottage industry for them.

Quite literally there seems to be an undercurrent of fanaticism at work with this tiny minority; that if you speak up and say that you don’t like your alopecia and want a cure – that you’d rather kiss your alopecia goodbye and never look back – that you are somehow a traitor to this righteous new enlightened higher order that is being thrust upon the whole of alopecia world. Think of it, how many of you at this very moment, as you read this, are feeling a bit uneasy just because I am being dead honest and very politically incorrect. Well, if you are feeling that way, just relax…I had AU for 19 years and that gives me a voice at any alopecia table whether people agree or not. I won’t be making apologies or excuses. And you know, most people probably agree with me – in theory at least. And that’s the real point of this, most people, by a margin of probably 500 to 1, just want alopecia gone from their life. They have no interest in redefining themselves, period.

It is this multitude of very real and ordinary people – the ones that put on their ball cap or wig and go off to work or school every day (like I did for many years) and get on with their life because they must – that Global Alopecia Mission stands for and with. It is for this huge majority, that has somehow come to be dominated by a tiny minority, that we speak. I can’t say it enough, we are not AGAINST education, awareness, or support; but FOR a CURE.

We are also against a business model that is designed to promote support at the expense of real and independent research. To drive this point home of how lopsided alopecia world has become, all you need do is look at the internet under alopecia. Of the hundreds of sites, blogs, and videos out there, I really couldn’t find any one that is actively and predominantly promoting research and passionate about finding a cure. That’s just insane. When people speak of cancer awareness or any other type of awareness, the premise is that it motivates people toward a solution…a cure.

Our struggle has taken a very peculiar and wrong turn. As a member of the alopecia community for 20 years, I don’t take any satisfaction in seeing our alopecia family become some sort of romanticized minority group, over and above, a bunch of cured, healthy ex-sufferers.

Which brings me to my final point, I can’t help but wonder what will happen to all those in the alopecia support cottage industry when an effective treatment and cure is available? I suspect they will be blown away like fallen leaves in the autumn breeze. You don’t need support if you have a treatment or a cure, do you? It might be wise that they all start thinking about it because I believe that the time is very near; the clock is counting down fast.

8 Responses to Something Strange in Alopecia World

    • Rob says:

      YoKasta, i feel so much that you are a true champion of the alopecia cause. You see both sides clearly and you’re not afraid to be honest even when no one wants to hear it. Always remember that sort of resolve puts you squarely in some of the finest company of people that have ever walked our earth and made a difference.

  1. Ann says:

    I am a woman who has  alopecia totalis since I was about 18 months old, and am now in my 49th year.  Tonight my daughter and I happened to be looking in the mirror at my white peach fuzz and 9 one inch strands.  I also saw the multiple series like pattern of scars from painful cortisone shots I endured as a young child given by the Doctor who invented the “hair transplant.”  Short term growth would encourage my parents to try again, but the pain was so overwhelming for me I would literally cry and vomit at the thought.   I recall a dermatologist who while removing a wart on my finger,  trying to talk me into oral cortisone when I as a young adult, with the persistence of a used car salesman, as I resisted the thought of treatment failure and secondary bone problems, much to his disappointment.  If God opens the doors for a cure, that would be wonderful, particularly for the young.  I just hope it is a FINAL definitive cure, not one with much pain and disappointment, and bad side effects.  Would I take it now?  I can’t answer that question for sure because I have been wearing wigs for so many years and have accepted it for the most part, except for after the divorce that shook my outer-appearance-confidence.   Maybe out of curiosity if it was safe, I would see what my head would look like with a flood of white hair and decide if I would keep it.  I guess, it would be nice to have the option – and I would REJOICE for those who so desperately want their hair back, as I did for so many many many years of my youth.  God bless!

    • Lana says:

      Ann,

      I applaud you for being so strong through all these years living with alopecia! I want nothing more than for this treatment to be the FINAL cure! Thank you for sharing your story. We would love for you to become a member of Global Alopecia Mission. We need beautiful, enriched with desire people just like you who are “not” ready to completely give up! We are here for one thing and one thing only, to finally beat Alopecia. Thank you once again! <3

      Lana

  2. Suzanne says:

    Those in alopecia support will still be around after effective treatment or cure because we will still have a commonality. Once again, I state that acceptance and wanting a cure are NOT mutually exclusive groups. Count me in for the trials. Who/what are overseeing the trials and what is the treatment?

  3. Suzanne says:

    I am interested in the clinical trials that are coming up. Who is overseeing these and can you give some more information as to what kind of treatment it is and who is compiling the data?

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