Friday, January 10, 2014

Looking Forward: Rare Disease Day 2014

Gold there is, and rubies in abundance,
    but lips that speak knowledge are a rare jewel.
~ Proverbs 20:15, NIV ~ 

It seems there is a cause for everything these days.  The next 2 months alone offer observances like National Penguin Day, League of Nations Day, and Thank a Mailman Day, just to name a few.  It can provide for plenty of giggles on morning radio shows, and great treats on special occasions like National Donut Day.  Yet, some days really stand apart from others in their importance.

For a number of years now, Snappin' Ministries has been a partner and ambassador for World Rare Disease Day.  While there are individual days, weeks, or months to bring awareness to serious diagnoses like diabetes, epilepsy, Down Syndrome, and spina bifida, World Rare Disease Day encompasses them all.

We can do more together than we can each do individually!

The reason our organization has thrown itself behind this event each year is because the vast majority of parents we serve in addition to parents of children on the autism spectrum are parents raising children with some sort of rare disorder.  That is compelling!  In fact, in my own household, 2 of my 3 special children have some sort of a rare diagnosis.  Both my son's hemophilia and my youngest daughter's erythema multiforme fall under the description of rare diseases.

As today's verse from the Book of Proverbs reminds us, the sharing of knowledge is an even more rare treasure than gold or precious gems.  Sharing that treasure of knowledge is a good way to summarize what Rare Disease Day is all about.  Building awareness is essential to engaging people in help for the needs of those with these particular diagnoses.  It starts with explaining to people what even defines an illness as a rare disease (one that affects fewer than 200,000 Americans).  That sharing of knowledge continues with explaining the key concerns of our families to those who are not directly affected by rare diagnoses.

This year, we are very much looking forward to collaborating with others including the Wisconsin Bleeding Disorders Network for our first official state observation of World Rare Disease Day.  Our small coalition has identified some of the major concerns of our rare families to be as follows:
  • Rare disease has a huge financial impact on the family.
  • Insurance does not handle every expense involved with a rare diagnosis.  For example, different types of medical equipment may not be covered.  There are also ancillary expenses involved, such as added fuel costs and convenience foods because the family is too rushed or exhausted for regular meals.  These things all strain the family wallet, adding to the pressure of such conditions.
  • While benevolent people are inclined to help families with a transient catastrophic diagnosis like childhood cancer, rare disorders are largely incurable and thus, chronic.  What this means is that families often need years of benevolent care, encouragement and aid.
Part of the treasure in sharing this knowledge is that we can bring increasing compassion to families facing these challenges as well as support for research.

We hope you join us this February 28, 2014 to observe World Rare Disease Day where you are.  Keep up-to-date with what we are doing via our Facebook Event.   Plug in to even more information on the Rare Disease Day US website or at The Global Genes Project.  With nearly 6,800 different rare diseases now identified, affecting almost 1 in 10 individuals, there is a tremendous need for us to be wise stewards of the knowledge God has given us, bringing people together in compassion and hope.

PRAY:  Father, thank You that each of us is a precious, rare creation whom You love boundlessly.  Help us to share that love by building awareness of the struggles that families living with a rare disorder face.  Make us each an inspiring motivator to serve just as You served, Jesus.  Pour out your infinite mercy, compassion and hope on those who are challenged by the difficulties of rare disease.

~ Barb Dittrich 

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