World Hemophilia Day 2016

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).
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    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).

    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

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    World Hemophilia Day 2014

    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.

    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.