World Hemophilia Day 2016

By Leave a Comment
Apr 17


Today is Sunday, April 17, 2016. A day like any other… Or, is it? Today is actually a day for remembrance. A day for advocacy. And, a day to raise awareness. Actually, today is a day like no other… Today is World Hemophilia Day.

World Hemophilia Day is an international observance held annually on April 17th by the World Federation of Hemophilia (WFH); which is headquartered in Montreal, Canada. The WFH was established back in 1963 by Frank Schnabel. World Hemophilia Day was started in 1989, and April 17th was chosen in honor of Frank Schnabel’s birthday. WFH has member organizations in 113 countries and also has official recognition from the World Health Organization.

Perhaps I’m putting the cart before the horse… For those of you who don’t know what hemophilia is… Hemophilia, Von Willebrand disease, and other bleeding disorders are inherited or mutated problems that affect our ability to coagulate. In other words, if we (I keep saying ‘we’ because I am a hemophiliac) get an internal injury (bruise, muscle injury, joint damage, or other form of trauma), it is impossible (or nearly so) to stop the bleeding. Essentially there is a missing protein in our blood that prevents it from clotting.

Prior to 1967, when plasma replacement products were introduced, we bled until we died or suffered irreparable injuries. Therefore our life expectancy was incredibly low. Once blood products were available to stop the bleeding we were living longer lives. But… Along with this miraculous cure came blood-borne pathogens and viruses like Hepatitis and HIV. These cursed side-effects nearly killed off all hemophiliacs during the 80s and 90s. However, we overcame this plague era and thrived to carry on for future generations.

It is estimated that 1 in every 10,000 people born in the United States have hemophilia. That said, it is also estimated that 1 in 1,000 people in the world have some form of bleeding disorder.

There are two primary types of hemophilia:

  • Hemophilia A is more common and refers to low levels of clotting factor VIII (eight).
  • Hemophilia B is more rare and refers to low levels of clotting factor IX (nine).

    •  

    There are other clotting factor proteins and other issues that can cause excessive bleeding, but Type A and B make up the disorder we call hemophilia. In addition to the types, scientists and doctors have further broken each type into levels of severity (mild, moderate, and severe)

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    Along with injuries, many people with bleeding disorders can experience spontaneous bleeding. Spontaneous bleeds occur as the name implies, without a known reason and randomly.

    The most popular treatment for hemophilia involves injecting the missing clotting factor into the bloodstream via needle and syringe. Hemophiliacs and others living with bleeding disorders in the United States have access to powerful medicines that often eliminate the majority of issues that have long plagued bleeders. Unfortunately, there are many countries in the world that have poor (or no) treatment. Many people around the world are left untreated and suffer horrible bleeding episodes.

    The goal of World Hemophilia Day is to raise awareness, increase the availability of treatments, and eventually (hopefully) lead to a cure. On this day, I ask that you remember people with bleeding disorders. This is a special day designated to raise awareness and help people around the world who suffer from bleeding disorders.

    Along with many of my blood brothers and sisters, I work hard to raise awareness by sharing information and links via social media. All day long I will use the HASHTAG “#WorldHemoDay” as I spread awareness. Please join me and help people suffering with bleeding disorders!!! If you do decide to participate in our social media inundation, please include these awesome organizations: @WFHemophilia, @HemophiliaFed, and @NHF_Hemophilia; which are all national and world organizations help advocate for everyone who lives with a bleeding disorder.

    Here is a sample tweet that you can adjust accordingly:

    Today is #WorldHemoDay PLS remember all easy bleeders and visit these orgs: @wfhemophilia @hemophiliafed @NHF_Hemophilia PLS RT

     

    No matter what you do to spread awareness, consider taking a few peaceful minutes to remember our fallen brothers and sisters. They died so that the rest of us can have better service and treatment. They died so that we have better and safer blood products and medicine available. They died for US.

    Thank you for your love and support!

    Your easy bleeding brother,
    Vaughn

    Please comment by clicking “Leave a Comment.” And, if you dig, share this article! Also, please type your email address into the “Subscribe” box up top to get updates each time I post a new blog article.

    You can rest assured that we will never SPAM your email account, and it’s only used to send the latest articles.

    Bleeding Painful

    By Leave a Comment
    Sep 16


    My buddy and blood brother, Jeff, recently recommended that I… Well, let me share his words:

    "If you don't mind, Vaughn, I know that a few members would appreciate hearing a little more about your hip bleed, treatment, recovery, etc. A few of our younger bleeder siblings are going through them right now so insight into recovery and management would be welcome."

    It just so happens that I healed and recovered from a pretty major hip bleed in the same way I have recovered from maybe one hundred bleeds over the last forty-eight years. However, I’ve perfected my technique over the last twenty or so years… This blog article will discuss what I did. Before starting, let me tell you what I mean by bleed… As most of you already know, I’m a type A mild hemophiliac. That means that my body does not produce an adequate amount of the clotting protein, factor eight (written factor VIII). Because of this I get bleeds that normally manifest themselves in my joints after an accident during one of my adventures.

    One other thing…

    WARNING: Exercise, stretching, sports, and other fitness related activities can be dangerous. You can be seriously injured, crippled, or killed. The opinions, stories, and ideas presented here are my own and do not constitute a recommendation of or endorsement for any particular or general use. I strongly recommend getting a complete physical and doctor’s approval before starting any type of strenuous activity. Especially if you are over the age of 40 or have high blood pressure, genetic heart problems or conditions, or elevated cholesterol levels. If you choose to workout, you do so at your own risk. In addition, working out requires patience, diligence, and above all else, using good form. Never bounce or over strain! Most important: listen to your body…

    Let’s dive into my latest hemophilia experience and how I dealt with it. On June 14th I had an accident on my skateboard while performing a stunt of sorts on a vert wall (think half-pipe). Before you say it… Yes… I know that hemophiliacs shouldn’t ride skateboards. Today’s post isn’t to figure out what’s wrong or right for a crazy hemophiliac to do. Rather, how I handle the agony of defeat.

    During the wreck, I felt each and every one of my forty-eight years… Suffice it to say that it hurt..

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    . Bad. I got up, brushed myself off (after laying there for a few minutes), and promptly read my body. It told me that I was having a bleed. You read that write… I read my body. You see, all of us have an innate ability to communicate directly with our bodies. As a hemophiliac this comes in very handy as I can always determine a bleed before going in to the hospital. This is the first part of today’s lesson. As an easy bleeder (person living with a bleeding disorder), you must learn to listen properly to your body.

    This may sound a little crazy, but I also self medicate with deep solitude and meditation. I spend time controlling my breathing and drawing into myself. I use the power of my brain to help with the healing. Crazy as it sounds, I believe it works.

    Step two was RICEFFU; which stands for Rest, Ice, Compression, Elevate, and Factor the Eff Up! In other words, I got home, laid on my sofa with ice on my hip and gave myself an intravenous injection of factor VIII. I continued this step for eight days, because this was a major bleed. For lesser bleeds I will only dose four days. Experience has taught me that the bad bleeds will slowly leak if I stop after four days… So, I did eight days of RICEFFU.

    The first two steps (recognition and medication) are the most important and must not be skipped if you really want to utilize the full extent of your recovery and produce the best outcome in the shortest amount of time. After decades of doing this part wrong, I now know how to shut a bleed down quickly and with the least amount of problems.

    Step three is an evaluation and extended rest period. At this point, I stop the factor, and stop the RICE. I take about one week and simply rest… No workouts. During this time I also carefully listen to my body and the joint in question. I assess and determine if I’m ready to move to step four; which is where the active recovery begins.

    By the way, it is imperative that you don’t workout or stretch during the initial healing period. PERIOD.

    With my medicine done, and my bleed completely stopped I move on to step four. This step is gently, but physical. I start gently stretching and getting motion into the joint. After about two days of this, and ensuring that the bleed is absolutely done, I throw in hot Epsom baths. That’s right, each day I fill a tub with hot (pretty dang hot) water and pour in Epsom Salts. Remember to never get into a hot bath if you think you are still having any bleeding, as this will only bring your injury back. Along with the hot bath and gentle stretches I do some soft pinpointed massaging.

    Each week I increase the depth and pressure of the stretches and massage. I also keep up the baths. This continues until I feel my range of motion is returning and the pain from the bleed is going away. Sometimes this step can take two weeks, other times it can last two+ months! This last time was in the two+ months category because of how damaging it was.

    Next comes body weight exercises, continued stretching, and baths. I also add my tai chi workout; which really helps on a mental level too.

    After all of these steps, I am ready to begin my real workouts (weight lifting, swimming, bike riding, and running) again. It is important to start out slowly and allow ample rest time. This will also help eliminate some of the pain that you will surely endure after having so much time off from training. Ramp the level of intensity up over a few weeks. Before you know it, you will be back stronger than ever. And, ready for the next bleed! …just kidding-sort of…

    To prove what I’m talking about, I’m going to race 156 miles in the annual Hemophilia Federation of America’s Gears for Good race; which I’ve done every year since its inception. Checkout my page and consider donating to help my worth cause of helping those with hemophilia: The-Talented-Mr-Ripley-2015

    Cheers,
    Rip (no pun intended)

    Please comment by clicking “Leave a Comment.” And, if you dig, share this article! Also, please type your email address into the “Subscribe” box up top to get updates each time I post a new blog article.

    You can rest assured that we will never SPAM your email account, and it’s only used to send the latest articles.

    World Hemophilia Day 2014

    By Leave a Comment
    Apr 17


    Today is April 17, 2014. Today is a day for remembrance. Today is a day of gratitude and thanks. Today is a day like no other… Today is World Hemophilia Day.

    For those of you who don’t know… Hemophilia, Von Willebrands, and other bleeding disorders are inherited or mutated problems that affect our ability to clot. In other words, if we get an internal injury (bruise, muscle injury, joint damage, or other form), it is impossible (or nearly so) to stop the bleeding. Prior to the 1960s we bled until we died or suffered irreparable injuries. Once blood products were available to stop the bleeding we were living longer lives. But… Along with this miraculous cure came blood-borne pathogens and viruses like Hepatitis and HIV. These cursed side-effects nearly killed off all hemophiliacs during the 80s and 90s. However, we overcame this plague era and thrived to carry on for future generations.

    World Hemophilia Day was set aside to think about and remember people with bleeding disorders. This day is a special day designated to raise awareness and care for people who suffer from bleeding disorders

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    Along with many of the bleeding disorder community, I am going to work hard to raise awareness by tweeting throughout the day. I will use the HASHTAG “#WorldHemoDay” and, along with many others, attempt to make this HASHTAG a “trend.” In order to get a HASHTAG to trend, you need thousands of related tweets within the same hour… So, I plan to HASHTAG it all day long, with an emphasis on banging out bunches of tweets during the one hour window of 11 a.m. until 12 p.m. EST. Please join me and help raise awareness!!!

    If you do decide to participate in our tweet-fest, please make sure you include the HASHTAG “#WorldHemoDay” at the very least, and consider including these awesome organizations: @WFHemophilia @HemophiliaFed @NHF_Hemophilia

    Here is a sample tweet that you can adjust accordingly:

    Today is #WorldHemoDay PLS remember all easy bleeders and visit these orgs: @wfhemophilia @hemophiliafed @NHF_Hemophilia PLS RT

     

    Also, @hemophiliafed, @NHF_Hemophilia, and @wfhemophilia are having a discussion on Twitter at 1 p.m. EST. Search for the HASHTAG #HemoChat and chime in!!!

    In addition, please help me with my bid to put a hemophiliac on the cover of Men’s Health magazine for the first time ever. We can make a statement that hemophiliacs and other people with bleeding disorders are capable of being healthy and fit too. And, we can raise a huge amount of awareness with this cover. You can vote here: www.mhguysearch.com/entry/37

    No matter what you do to spread awareness, also remember to take a few peaceful minutes to remember our fallen brothers and sisters. They died so that the rest of us can have better service and treatment. They died so that we have better and safer blood products and medicine available. They died for US.

    God bless the easy bleeders!

    Thank you for your love and support,
    Vaughn “the Easy Bleeder” Ripley

    Please comment by clicking “Leave a Comment.” And, if you dig, share this article! Also, please type your email address into the “Subscribe” box up top to get updates each time I post a new blog article.

    You can rest assured that we will never SPAM your email account, and it’s only used to send the latest articles.

    Ankle Fitness

    By Leave a Comment
    Apr 16


    In the past we have done many health and fitness related articles. And, even though some of these discuss good routines for hemophiliacs, none have specialized or been pinpointed at easy bleeders. I recently decided to start a series of articles that are primarily based on people with bleeding disorders. All of these workouts will work for clotters (non-hemophiliacs), but they are a gentler way to strengthen your body, and will focus on specific joints.

    Today we will tackle one of my target joints, and also one of the most popular joints for bleeds. The ankle. Like all joints, the ankle is complicated and consists of several large muscles, tendons, and ligaments. Because this joint is so easy to injure and start a bleed, it is imperative that we strengthen it when its healthy. A strong and flexible ankle is a fantastic foundation to avoid injuries and potential bleeds. That said, hemophiliacs and Von Willebrands sufferers need to strategically exercise these joints to carefully and slowly strengthen them over time.

    WARNING: Exercise, stretching, sports, and other fitness related activities can be dangerous. You can be seriously injured, crippled, or killed. The opinions, stories, and ideas presented here are my own and do not constitute a recommendation of or endorsement for any particular or general use. I strongly recommend getting a complete physical and doctor’s approval before starting any type of strenuous activity. Especially if you are over the age of 40 or have high blood pressure, genetic heart problems or conditions, or elevated cholesterol levels. If you choose to workout, you do so at your own risk. In addition, working out requires patience, diligence, and above all else, using good form. Never bounce or over strain! Most important: listen to your body…

    There are three primary muscles that are associated with flexing and securing the ankle joint. Most people think of only one and simply call it the calf muscle. However, the calf muscle is actually made up of two large muscles: Gastrocnemius and Soleus. The gastroc (short for gastrocnemius) is normally the muscle we refer to as the calf, because it is larger and more pronounced. But, the lesser known soleus is very important for ankle flex too. The difference comes mainly from the position (bend angle) of the knee. When the leg is straight (or fairly straight) the gastroc is the muscle that comes into play when standing on your toes. If your knee is bent, then the soleus is the one that flexes the toes (and foot) down.

    You work the gastroc by doing the exercise known as standing calf raises. You work the soleus by doing the exercise known as seated calf raises. Both exercises are very important to strengthen the calf muscles and associated ligaments and tendons.

    If you recall, I said there are three primary muscles… Well, there happens to be a muscle on the front side of the shin called the tibialis anterior; which is important for lifting the foot and toes upward (as opposed to pressing them down). Most people overlook this muscle entirely, because it doesn’t really add much bulk or “look” to the calves. However, hemophiliacs (and anyone interested in a stronger more supportive ankle), should not skip this important muscle. Every muscle in our body has an antagonist muscle or muscles. When we are strengthening a joint, it is important to hit the agonist (primary muscle) and the antagonist (opposite side the flexes the joint in an opposite direction). This is the secret to a health, strong, and supportive joint!

    Since we listed the tib (tibialis anterior), let’s touch base on how to exercise it. The simplest way is to sit on a chair or bench, place some weight (light weight is more than ample for this weak muscle) on your toes and then do reps lifting your toes off the ground. You can (and should) add range of motion by placing something under your heel and lifting it a few inches off the ground.

    Just like other muscles, your calves need rest, so do not exercise them everyday.

    Once your muscles are good and warm from a workout, do some slow, deep stretches that you hold for 22 (or so) seconds. Never bounce or pop into a stretch

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    . Instead you will gradually and carefully deepen a stretch during the 22 seconds. Also, make sure to stretch both calf muscles (gastroc and soleus) by stretching with your leg straight and bent. And, hit your tib by pointing your toes out and away from you as far as they’ll comfortably go.

    One final note. There are generally three agreed upon types of weight training for muscles:
    1. Strength (perform 5 to 8 reps of extra heavy weight failing on the last rep)
    2. Bulk/hypertrophy (perform 8 to 12 reps of moderately heavy weight failing on the last rep)
    3. Endurance (perform more than 12 reps of moderate weight without a real failure rep)

    For hemophiliacs, we are trying to strengthen the joint without injury so I recommend not going to absolute failure. In other words, “leave one in the can.”

    That’s all for today… Look for other joints, and hemophiliac related workouts in the near future.

    Let’s work together and create Healthy Wealthy joints!!!

    Cheers,
    Rip

    Please comment by clicking “Leave a Comment.” And, if you dig, share this article! Also, please type your email address into the “Subscribe” box up top to get updates each time I post a new blog article.

    You can rest assured that we will never SPAM your email account, and it’s only used to send the latest articles.

    Hemophilia Advocacy

    By Leave a Comment
    Feb 19


    It has been nine days since my last article… I try to get a blog post in every other day or so… However, this skipped time was warranted, because I was spending time preparing for the exciting meetings that I had in Annapolis with the rest of the Hemophilia Foundation of Maryland (HFM) peeps. It was our goal to meet with many of the Maryland House Delegates and Senators to discuss the “Health Insurance – Specialty Drugs” bill (House Bill 761 and Senate Bill 874), inform them of the bill and how it will be beneficial to the hemophilia community (and rare chronic disease communities in general), and to ask each of our representatives to please vote “yes” on the upcoming bill.

    I was recently elected to the HFM board of directors as one of the advocacy chairs. These meetings with state and federal representatives is just one piece of my role as a hemophilia advocate. And, like everything else in my life, I dove in head first!

    This is how my two day march on Annapolis Maryland went:

    Monday, February 17, 2014 – My wife Kristine and I piled our children (Trinity and Xander) into our car and drove the 90(ish) minutes to Annapolis. We arrived and checked in at the Historic Maryland Inn of Annapolis on Main Street. This is a gorgeous hotel that throws back (literally) to the 17th and 18th centuries. The elegance and ambiance is immediately heart warming and downright awesome! Our room was spacious and beautiful. After dropping our bag in the room, we headed downstairs for lunch with our fellow easy bleeders (hemophiliacs) to discuss politics and our plan of action.

    HFM and a few important sponsors did a fantastic job of supplying us with information packets (for ourselves and the representatives we would visit), providing food and fun, giving us some role-playing examples of how our meetings would go, and covering any additional questions we had. Let the nerves start to tingle and the sweaty hands begin! After the informative meeting, we broke for a few and then went for a fantastic dinner at Buddy’s Crabs & Ribs (an Annapolis staple). Along the trek to Buddy’s, we passed an alley that had a perfect (and serene) view of the Maryland State House… Trinity and Xander were kind enough to pause and pose with this historic monument and achievement.

    After dinner, we waddled back up the little hill and entertained ourselves by reading over the materials that HFM provided. Before long, our lights were out and we were sleeping soundly… Until… 1:17 a.m. when Xander suddenly kicked out (he was upside-down in his bed) and knocked the phone off the bedside table. I put it back up, hung the receiver up, spun Xander upright, and climbed back into bed. Just before sleep hit me again, Xander suddenly kicked the phone off again… How the heck did he get spun upside-down again?? Deja vu all over again and then back to sleep

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    . The next morning, Xander told Mommy and me that he had a great dream about Ninjas attacking our family and he protected us by kicking them in their “parts.” Ahhhh… I see… The phone was a ninja’s parts. Now it all makes sense. Xander is five by the way. HA!

    Lest this long night be over, Kristine and I were both awakened at 3:09 a.m. to the beeping of a truck in reverse. WTH? I decided to drain myself of last nights iced teas and waters and take a peek out the window. Low and behold, it was snowing… There was a snow plow out there, moving back and forth and beeping along the way… Great. hehe. It honestly felt like that truck stayed below our window and stuck in reverse for two hours.

    Perhaps there is a little bit of irony in this story as I think about icy cobblestone streets and brick sidewalks that were recently covered with snowfall. Now picture a handful of hemophiliacs walking said streets and sidewalks. HA! The things we will do to get a vote!

    Tuesday, February 18, 2014 – Waking bright and early, we joyfully bounced around the room preparing and packing. A quick shower, shave, and so on and so forth… Soon, I had on my fancy-dancie blue suit (complete with U.S. flag lapel pin) and we were off running. Downstairs we enjoyed a brief breakfast, and then made our way to our first meeting at the Senate building.

    Kristine, Trinity, Xander, and I started our day by meeting the Honorable Senator Ronald Young. Firstly, I honestly was expecting to only meet aides… And, it started out looking like we would. The Senator’s aides greeted us, and explained that he was about to leave for the Caucus assembly and he would not have time to see us. However, he overheard us chatting and came out with a smile on his face. Senator Young was very polite and personable. He listened to our story intently. and when we finished he said, “I will absolutely vote yes on this bill.” YAY!

    I should note that we were ten minutes early to our meeting with Senator Young and I firmly believe this is why we even had a chance to talk with him. He gladly posed with us (see the “featured” photo at the top) and then took a picture with Trinity and Xander…

    Next, we crossed Bladen Street and entered the House of Delegates. We were early, so we dropped off three information folders for delegates that we didn’t have appointments with. One of these aides we met with previously worked with a congressman (I think from Minnesota or Michigan) who had three hemophiliac boys. She was very helpful and said she would not only hand off the folder, but also push our point with the delegate. Another win!

    Our final face-to-face was with the Honorable Delegate Michael Hough. It turns out that he is our neighbor, and my wife is actually friends with his wife, Jo. When we first arrived, his aide said that Hough was in session and not available for a meeting. He was kind, sat with us, and said he would pass the info packet on to Delegate Hough. Just before we left the meeting, my wife said, “Mike lives in our neighborhood, and I’m friends with his wife.” This had a very big impact on the aide, and he immediately texted Hough. Moments later, he announced, “Delegate Hough is going to be out of his session with a few minutes to spare before the Caucus and he would very much like to meet your family.” WOW??!!

    Delegate Hough was truly awesome and kind as he not only met with Kristine and me (and our kids), but he took time out of his busy schedule to walk us over to the State House and give us a guided tour! He actually walked us through some of the history of the building and told us stories about Washington, Hamilton, and Franklin while walking us into various rooms. We literally got the behind the scenes tour filled with neat tidbit of history.

    He took us into the original House of Delegates room; which was recently renovated. In here he took another fun photo with the kids. By now, they were really enjoying themselves and learning so much about our country and the way the government works.

    Delegate Hough also showed us the resignation letter of George Washington with a twinkle in his eye. It was incredible awe inspiring and very positive! As we parted ways, he explained to us how we could go up above the Senatorial and Delegate meetings and view them from a balcony. I never knew that we (the public) had so much access, but I learned just how high these representatives hold us, their constituents.

    This is Kristine and the kids watching the Delegate session starting up:

    All-in-all I would call this trip a huge success. And, an incredibly strong learning session to boot! We met a Delegate and a Senator. We met dozens of aides. We told our story and the story of H.B. 761. We asked for a “yes” vote from everyone. We passed out five information packets. And, I gave away three signed copies of my book, Survivor.

    Takeaways

  • Always be completely prepared for meetings with representatives. Study their CV, know the names of their aides, and plan some alternate conversation points, should there be contention. Know what your point of contact looks like, in case you run into them in the hall, rather than their office.
  • Arrive early! The only reason that Senator Young had a few minutes for us, was because we were ten minutes early and caught him on the way out the door.
  • Be confident and well-read. Leave them feeling as though you are someone who carefully studies the issues and also someone who votes!
  • Don’t be afraid to bring your children (if appropriate). Trinity (nine years old) and Xander (five years old) were a bigger hit than me and Kristine. All of the aides loved them, and the representatives were delighted to take photos with these youngins. On top of that, the learning experience for these children was immeasurable!
  • Enjoy yourself and be stress-free. This one may be tough for some, but it is well worth it to approach these people as peers (and actually employees), because they are. We often put them on a pedestal and think they’re impossible to reach. Nothing could be further from the truth. Everyone I’ve ever met has been extremely nice and listened and talked openly and in a friendly manner.
  • Before you part ways with your representative(s), ask for their support, and ask for a “yes” vote. You will be surprised how polite and honest these folks are!

    •  

    I hope you dug this article. And, perhaps even gleaned something from it.

    Cheers,
    Vaughn

    Please comment by clicking “Leave a Comment.” And, if you dig, share this article! Also, please type your email address into the “Subscribe” box up top to get updates each time I post a new blog article.

    You can rest assured that we will never SPAM your email account, and it’s only used to send the latest articles.

    Through My Eyes

    By Leave a Comment
    Jan 24


    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

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    . 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

    Please comment by clicking “Leave a Comment.” And, if you dig, share this article! Also, please type your email address into the “Subscribe” box up top to get updates each time I post a new blog article.

    You can rest assured that we will never SPAM your email account, and it’s only used to send the latest articles.

    Giveaway for Hemophilia Awareness Month

    By Leave a Comment
    Jan 13


    Do you want to win a COo.oOL prize?

    I’m giving away a $67 Amazon Gift Card and a signed copy of my book, Survivor: One Man’s Battle with HIV, Hemophilia, and Hepatitis C at the end of March. March is Hemophilia Awareness Month, and I decided to run a contest/giveaway to support Hemophilia Awareness, give back to my friends, and gain blog followers at the same time!

    It’s easy to enter and I will draw one lucky winner from the contestants on Monday, March 31, 2014. In order to qualify you simply need to subscribe to my blog. Subscribing is easy and I never SPAM my followers. Subscription to my blog will simply get you an email anytime a new blog article appears on the Healthy Wealthy Tribe blog! You will find the subscribe entry at the top or right side of this blog. Type in your email address and hit the “subscribe” button.

    That’s really all there is to it! If you are already a subscriber, then you are already entered!

    Previous Years Winners
    2013 – Liselle Easto
    2014 – TBD

    If you dig, please share this with your friends and followers. Also, please drop by my FB pages and like them:
    My author fan page
    Healthy Wealthy Tribe blog page
    Survivor page

    Thank you for your support, friends!

    Note: You must enter by 11:11 p.m. EST on Saturday, March 29, 2014. Also, see the “fine print” below for contest rules.

    Also, please checkout the following sites for more information about hemophiliacs and Hemophilia Awareness Month:
    National Hemophilia Foundation Website
    Hemophilia Federation of America Website

    Good luck!

    Signed, your easy bleeding friend and compatriot,
    Vaughn Ripley

    CONTEST RULES AND LEGAL DISCLAIMER
    Only one (1) winner will be selected for this contest. Vaughn Ripley reserves sole and final judgment as to all matters concerning contests and interpretation of contest rules.

    By entering this contest, you agree to abide by the following terms:

    How To Enter/Eligibility
    No purchase is necessary to enter this contests.
    Contestants must be 18 years of age or older and a legal resident of the USA, Canada, UK, or Australia. Entries must be sent using the format provided above.

    Contest Deadlines
    All entries must be submitted on or before 11:11 p.m. EST on March 29, 2014.

    Winner Selection and Notification
    The winner will be randomly selected on March 31, 2014. The odds of winning vary due to the number of entrants. The drawing winner will be notified via Tweet, Facebook message, and through announcement on Vaughn’s fan page. The decisions made by the judge (Vaughn Ripley) regarding this contest are final and binding.

    Winner Disqualification
    If a winner cannot be reached after a reasonable amount of effort has been made to notify the winner of the prize, the winner forfeits his/her rights to the winning prize. If a winner does not get in touch with Vaughn Ripley within 21 days of winning, the winner forfeits his/her prize. Vaughn Ripley assumes no responsibility to ensure winner response.

    General Conditions
    No purchase necessary. Void where prohibited by law. All decisions of Vaughn Ripley are final. By entering, participants warrant and represent that they agree to be bound by these contest rules and the final decisions of Vaughn Ripley. All taxes on any prize won are the sole responsibility of each winner, including, without limitation, any federal, state, or local taxes, which may be deemed applicable in such winner’s jurisdiction of residence. The winner shall be solely responsible for the reporting and payment of all taxes incurred by acceptance and use of the prize(s) (or any portion thereof), if applicable.

    All prizes will be mailed to participants free of charge. Delivery method is at the sole discretion of Vaughn Ripley.

    Vaughn Ripley reserves the right to cancel contests at any time for any reason. Vaughn Ripley reserves the right to modify the dates and/or terms of contests at any time without prior notice.

    Prizes are offered “as is” with no written, express, or implied warranty.

    Vaughn Ripley is not responsible for late, lost, illegible, misdirected, mutilated or incomplete entries.

    Anyone using fraudulent means to participate and/or win the contest will be disqualified

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    . ANY ATTEMPT BY AN ENTRANT TO UNDERMINE THE LEGITIMATE OPERATION OF THE CONTEST MAY BE A VIOLATION OF CRIMINAL AND CIVIL LAWS. VAUGHN RIPLEY RESERVES ALL RIGHTS, INCLUDING THE RIGHT TO SEEK REMEDIES AND DAMAGES (INCLUDING ATTORNEYS’ FEES) FROM ANY ENTRANT ATTEMPTING TO DO SO TO THE FULLEST EXTENT OF THE LAW, INCLUDING REPORTING SUCH ACTIVITIES TO THE APPROPRIATE AUTHORITIES WHICH MAY RESULT IN OR LEAD TO CRIMINAL PROSECUTION.

    Contestant Releases
    Acceptance of prize constitutes permission to use winners name, city, state, and country for promotional purposes.

    Contestants agree that the sole and final judgment as to all matters concerning contests and interpretation of contest rules are at the sole discretion of Vaughn Ripley.

    Whew! Now that the disclaimer is out of the way… Let the games begin!

    Please comment by clicking “Leave a Comment.” And, if you dig, share this article! Also, please type your email address into the “Subscribe” box up top to get updates each time I post a new blog article.

    You can rest assured that we will never SPAM your email account, and it’s only used to send the latest articles.