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.