Wednesday, March 2, 2016

Bleeding Disorders Awareness Month - Drawing a Bigger Circle

For the life of a creature is in the blood...
~ Leviticus 17:11a, NIV ~

I can remember being in Wisconsin Dells at a family retreat when my children were quite young.  Another mother, raising a child with a different bleeding disorder, shared with me that I was the first mother of a child with hemophilia who had treated her as my equal in the community.  Honestly, I was shocked.  Why would I exclude another family whose child was facing a similar battle?  In fact, I felt blessed by comparison because I had preventative, at-home treatment for my son's hemophilia, whereas this other parent didn't have that for her child.

For the majority of my son's nearly 16 years of life, I have watched our national community label most of their efforts as "hemophilia awareness" or "hemophilia advocacy."  This has made it more difficult for individuals with other bleeding disorders to be heard or understood.  Families living with diagnoses like thalassemia, Factor V Leiden disorder, or sickle cell disorder didn't even to seem to have a seat at the table.

A couple of years ago, there was a glimmer of hope from our part of the country as the Hemophilia Federation of Illinois led the way in renaming itself as the Bleeding Disorders Alliance of Illinois.  That was a great stride forward in uniting our regional community.

This year, an even more significant breakthrough has been made!  Traditionally, March has been known as "Hemophilia Awareness Month."  Designated as "National Hemophilia Month" in a proclamation by President Ronald Reagan in 1986, the community has used the month to build awareness and support. This year, with the full encouragement and support of both the Hemophilia Federation of America and the National Hemophilia Foundation, the U.S. Department of Health and Human Services has recognized for the first time as a National Health Observance, March as Bleeding Disorders Awareness Month.

There is power in numbers!

What this new designation means is increased awareness and engagement for all.  While there may only be approximately 17,000 nationwide who are diagnosed with hemophilia, it is estimated that as much as 1% of the total population may have Von Willebrand Disease. Bleeding disorders awareness means that we can bring more attention to the public regarding symptoms such as repeated bruising larger than a quarter, or heavy, painful menstrual cycles.  This means better care for people who may not otherwise realize they have a bleeding disorder.  It also brings a broader discussion of the challenges in living with these diagnoses.

Snappin' Ministries serves parents and caregivers raising children with all of these various bleeding disorders (as well as many other diagnoses), so it thrills me to see leadership that draws a more inclusive circle.  That is what Jesus did.  He realized and still reminds us that we have more in common than we do apart.  Our humanity thrives on mutual support.

I encourage you to educate yourself during the month of March, for your sake and for the sake of supporting others.  Some great places to start:

May you find yourself in this year's wider circle, raising awareness for those who face the life-or-death challenges involved in the blood.

PRAY:  LORD, You have taught us that there is life in the blood.  Help us to unite in our humanity to support those with issues of the blood during the month of March and beyond.

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