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Shoes of a Hemophiliac

We often hear statements like, "Oh yeah ... Well you should try walking in my shoes..." Today, I'd like to offer my shoes and allow you to see through the eyes of a hemophiliac. Let's start off by explaining what the heck hemophilia is. Hemophilia is a rare bleeding disorder in which your blood does not clot normally or properly. It is carried in the X chromosome, and is called an X-linked genetic disorder. Cutting through all of the obfuscation, it essentially means that I inherited a factor VIII (factor-8) deficiency from my mother, who was a carrier. Dumbing (is that even a word?) it down even further, it means that unlike average boys and girls, if I get bruised or cut, I will not stop bleeding without medical assistance.

My disclaimer: While I have lived with this confounded disease for 45 years, I do not claim to be a medical professional nor someone who even knows what the heck he's talking about. I am a mere mortal who loves sharing information, be it on the medicine I take or the rx discount card I have. I am often wrong, and for that I apologize. I try to investigate and ensure that my data/information is correct, but as is always the case, I am bound to be wrong about something. At the least, I probably will have a misinterpretation or two in here. So, seek the advice of a medical professional if you are planning on writing a report on my post. Also, I do not necessarily condone some of the things I did and am not in any way suggesting that hemophiliacs should avoid listening to their parents and doctors. I am merely pointing out that I did some things and got away with them. Carry on!

About a generation or two ago, science made some huge breakthroughs with the hemophiliacs, and we created products based on blood donations called plasma, cryoprecipitate, and factor VIII that could temporarily turn a bleeder into a normal clotting person. This technology added years even decades to hemophiliac life lengths. It also made it possible for us in the bleeding community to participate in more normal activities and sports (to some extent). I should mention that there are different types of bleeding disorders and they do not all use factor VIII to stop the bleeding. But, for simplicity's sake, I went with what I am (type-A).

During the early years of this modern medical miracle, hemophiliacs were unfortunately hit with several life-threatening blood borne pathogens, diseases, and viruses. Among these were HIV and Hepatitis. Because I am the lucky one, I got both of these. You heard me right ... I said, "Because I am the lucky one." I do consider myself lucky, because were it not for the advent of modern medical science I would have died from a bleeding issue years ago. As I'm sure you can imagine, the life expectancy of hemophiliacs was very short prior to the 1950's. This is one of the reasons that I feel lucky. I also feel lucky in that I am only a mild hemophiliac. Whilst at hemophilia camp back when I was thirteen I had the pleasure of meeting many hemophiliacs that were not as lucky as me. One was in a padded wheelchair because his ankles and knees were so bad off that he would have bleeding episodes from simply walking.

In addition to the technology and mildness, I also feel lucky because of the awesome support system that is now available to hemophiliacs. Not only do we have the World Federation of Hemophilia, National Hemophilia Foundation, Hemophilia Federation of America, and state groups (I follow the Hemophilia Foundation of Maryland), we also have hemophilia camps (I went to Bold Eagle), support groups, discussion forums (I'm a huge fan of HFA's Blood Brotherhood Forum, and online services galore.

And, as if that wasn't enough, we bleeders are also surrounded and supported by loving family and friends!

Now you can see why I feel lucky.

Now that I convinced you that I'm lucky, we can dabble in a few of my unlucky areas. When I was a kid I was regularly picked on and even bullied. A few of the more obstinate bullies even punched me exclaiming, "I wanna see you swell up!" And, they called me names like: homo-feel-ya or something similar. It was often brutal, but it also taught me how to calmly take these attacks and live despite them. So, in some weird way, the bullying also strengthened me.

"What does not kill me, makes me stronger."

I was very sheltered by my mother as I grew up. I fear that some of this may have been the cause for my dramatic outburst as a teenager when I started doing things I shouldn't have (like playing football with neighborhood kids and skateboarding). However, I know that she was worried about me, and wanted me to be safe. The funny thing about this protection and my adrenaline-based extracurricular events is that I often sustained some serious bleeds while being "safe." As a matter of fact, the very most damaging and worst bleeds occurred while playing at camp bold eagle (with other hemophiliacs-and being safe), getting my wisdom teeth pulled, and, of all things, having my toe lanced to cure an ingrown toenail issue. So, avoiding contact sports and other dangerous habits was not my only nemesis. As a bleeder, I was acutely aware of the fact that I was susceptible to all manner of painful bleeds.

If I have learned one very important thing, it is something that ALL of us should learn (bleeder or not). That is, our choices have consequences. That statement is so important, that I will repeat it, "Our choices have consequences." And, it is our responsibility to choose wisely. Actually, I love the word responsible. I prefer to break it down and say it like: response able. In other words, each of us is able to respond. Thinking like that might save lives!

Now that I've put the fear of a slow and painful death by horrible bleeding episodes in you, let me leave you with a parting note ... Live life! You heard it from me ... As long as you realize (honestly) that there are consequences for your decisions, and you weigh those consequences carefully thinking about the future and how it will affect you, I think you should do whatever you want (please read the above disclaimer). I may not necessarily be the best role model for fellow hemophiliacs, because at some time or another I have rock climbed, raced motorcycles, and skateboarded (among other deadly things *insert dastardly music here*). However, I am still here

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. I'm still here because I'm lucky ... But, I also create some of my luck through careful thought and recognition of what I'm doing. I guess what I am saying is, be response-able with your choices!

I hope this article touched a nerve. And, I sincerely hope I helped in some way. If you aren't a hemophiliac, then maybe this opened your eyes a little bit.

Thanks for listening,
Vaughn "the bleeder" Ripley

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  1. A great summation of what it means to be a person with hemophilia. Vaughn, you’ve done so many things for the bleeding disorder and HIV / AIDS (and HEP C) communities that it amazes me, a similar man who actually does “walk in your shoes”. I have been trying to broaden my reach into the community and your blog is always an inspiration. This one, in particular, is a great summation of what it all boils down to. I too consider myself to be “one of the lucky ones”, not just because my HIV levels have remained undetectable for nearly 30 years now, but because I have a voice and am a person with a genetic disorder that had to struggle from day 1. My shoes are usually “high tops”, and I may need a cane to assist me walking at times, but my mind and voice are as sharp as they come. I’ve spent a lot of time in the shadows during the “dark ages” of the HIV / AIDS era of the 80’s and early 90’s, but have found new awareness and a strong desire to help those who don’t know about any of the “Three H’s”. It’s a great thing to talk to a new parent of a child with hemophilia and be able to tell him that it’s going to be okay. It wasn’t always that way and yes, if we were born in another era, we wouldn’t have lived this long or have had the opportunity to take the steps we’ve taken. The future is bright and it’s people like you who are helping to make a difference and show the world that even the highest of mountains can be climbed, step by step. I’ll be launching my blog soon and I look forward to sharing my stories with everyone. And I will be honored when we finally meet in person and shake hands, one blood brother to another. Peace.

  2. Michael,

    I sincerely appreciate your kind words. And, my heart feels for you and the things you have had to endure. I believe that life is a treat regardless of our suffering. It is up to those of us who fight through these aches, pains, diseases, and undeniable fear to raise our chins and inspire people to be the best that they can despite issues. I love you, brother. And, wish you the best! Hopefully we will meet face-to-face sometime in the near future … Until then, be safe and breathe on.


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