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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    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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    Read his personal blog: HIVLongevity.com
    Visit his web page: www.VaughnRipley.com

    Comments

    1. Yahna Christensen says:

      Today my heart is with all easy bleeders. As a mother of a hemophiliac son and a sister of brothers with hemophilia, one who died at age 8 from a bleed into his head, I know firsthand the pain, the trials, and yet the blessings especially in these great organization as they are extended family offering camaraderie, compassion, support. I extend my gratitude this day for these great organizations and deep love for All easy bleeders

    2. Brent Mascorro says:

      Thank you Vaughn for another wonderful post. Today is a very powerful day for many reasons. I must recognize all the people who have advocated and fought for both awareness and adequate treatment for people affected with bleeding disorders. Because of the tireless work of so many my two young sons, who live with severe hemophilia, are able to live life to the fullest. Secondly, I ask everyone to please tell just one person about World Hemophilia Day and what hemophilia is. Awareness raises interest which raises support which raises funds which raises the number of people throughout the world who receive treatment. 75% of people throughout the world affected by bleeding disorders do not receive adequate treatment. By reading this and passing on the word that will change.
      Brent

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