Through My Eyes

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 46+ 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. 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 an “easy bleeder” (my term for a hemophiliac) into a normal clotting person. This technology added years even decades to the longevity of hemophiliac. 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 (I believed the average death occurred by eleven years old back then). 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 am a board member for 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 easy 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.”

    —Friedrich Nietzsche

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. 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 (reading),
Vaughn “the easy bleeder” Ripley

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About Vaughn Ripley

Vaughn is a happily married daddy, author, and CIO. He is an HIV+ hemophiliac, and is one of the longest surviving HIV+ people in the universe.
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Follow Vaughn on Twitter: @vripley
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Read his personal blog: HIVLongevity.com
Visit his web page: www.VaughnRipley.com

Comments

  1. I really enjoyed this article, and I have to say the those that dont deal with Hemophilia have no idea what we all go through, the outsiders are always to quick to ASSUME and so love to play devils advocate. I have severe factor 9 & HCV(genotype 1 severe) I am the hemo that everyone loves to hate(LOL) because I refused to follow the “hemo” rules example; 3 time golden gloves champion competed for years in underground MMA(worse than UFC) played football, hockey, baseball in high school. I always love to tell people for them to come walk in my shoes when I tell them that they always back off(LOL). I very dear friend of mine asked me before he passed to give our fellow blood brothers a message Get Busy Livin’ or Get Busy Dying’. I am also friends with a group of Hemo’s that are studio musicians and have worked with bands such as Metallica,Godsmack, Disturbed and host of others, 4 of 5 of them are 6’9 there drummer is 6’11 they have boys that are also hemos are musicians and are married to carriers.

    • Josh,

      Thanks for the kind words. Wow! Sounds like you take hemophilia to the extreme! Like I allude to in this article, I believe some of our dangerous tendencies come from growing up so sheltered. So cool to hear from another easy bleeder who does NOT take it easy when it comes to life. Carry on, blood brother!

      -V

      • I have a 5 year old with Severe Hemophilia B and reading your words are helping me cope.

        • Hi Susan!

          Great to hear from you. And, thanks for the kind words. I wish I could say it gets easier, but it simply does not. That said, you will get better at coping and that is a quite a relief. Good luck! And, please stay in touch.

          -V

  2. Dan McNally says:

    Vaughn, I believe the adversity you faced is what turned you into the outstanding man you are, today. So, although you refer to yourself as being “the lucky one,” in reality, we, all your friends and family, are really the lucky ones, for having you in our lives! See you in Chinatown next week!

  3. Craig Walker says:

    Hello Vaughn
    Great article, as a 32 year old server type A Hemophiliac who is a avid Sport biker, gym goer, scuba diver and has also enjoyed skydiving and pretty much any other extreme sport i have the chance to do I couldn’t agree more. thanks for taking the time to write share your story and I wish you many more exciting “chapters” 🙂
    sincerely
    Craig Walker

  4. Thank you for this article. As a mom to a young hemo, it is really hard to not just want to wrap him up in bubble wrap. At almost 8 years old, his passion is baseball and he plays with an older team. I make him do a few extra things for safety, but I encourage him to go play and have fun.

    I laughed at the truth of getting hurt at camp. Same thing happened to.him this past summer. It was his first time sin

  5. Aaron Bates says:

    I was so happy to come across this article!. There are so many similarities from this story that mirror my own life and struggle almost identically. Thank you for sharing!

  6. Factor 8, 63 yr old Fluctuating factor from mild to danger in zero. One of the few. Over protective mother syndrome is an occurring reference that I have heard from many Hemos. Thank the creator for them. One of the few things that have helped me to cope with this awful illness is medical marijuana. Since I have been taking this in oil form for the last seven years my bleeding episodes and pain due to ostio have decreased dramatically and I mean dramatically. For those who suffer, please investigate. Until this point I had never used it.It has also cured cancers in three of my best friends. I found the reference to this from some Russian hematologist. and “run from the cure” youtube. Be safe be well and today is a good day.

  7. Thank you for your story. First off I nor any of my family r bleeders , however, my daughters best friend and his whole , yes whole, family are bleeders. We have learned so much about the disorder and in fact my daughter was lucky enough to go to the Hemophillia Family Fun Fair in Kc last year… I have seen just a small glimpse into this brave families lives and have to say they r all my Heros thank u again for sharing ur amazing story

  8. Hi Vaughn,

    Great article I love to see that you are truly living your life. I was diagnosed with mild vonvillebrands at the age of 17 after spending 2 years in and out of hospital wondering what was wrong with me as my levels were constantly high & low drowning on what time of the month I had a blood test. Finally I got an answer. My Mum told me best to give up all my sports which I played basketball, tennis, badminton etc. of course I did fearing my life. How wrong I was! By the way for me there is no history of bleeding disorders in my family hence they couldn’t work out was was wrong with me. We then found out a distant cousin had haemophiliac.

    I then lived back in Ireland but now live in Australia… Through research I’ve found there is no need to be scared off it at all and people cope fine with it.

    So really appreciate your article it was awesome!

    Cheers
    Lorraine

  9. Dr. Vijayakumar says:

    The article from real life is truly inspiring. In fact I got it printed and circulated among over 200 hemophiliacs with me in the only Comprehensive Haemophilia Care Centre in the state of Kerala in India. Still about 70% of the patients with severe haemophilia become crippled for want of clotting factor concentrates due to the prohibitive price and those with inhibitors are doomed. The Government support is minimal (limited to a lifetime ceiling of $3500/-).It would be a great blessing if at least some help for children s forthcoming
    Dr.Vijayakumar

    • Dr. Vijayakumar,

      It is fantastic hearing from you. And, thank you so much for sharing my article! I have always been amazed at the low amount of support for people with bleeding disorders, especially in places like India. I wish there was something I could do to help spread awareness and assist you guys! I am doing everything I can here in the states, but I wish there was more. I will continue leading the fight to raise awareness and help those who need it. Thanks so much for your comment!

      *hugs*

      -Vaughn

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