Tuesday, February 28, 2017

When Rare Doesn't Feel So Remarkable - #RareDiseaseDay

I raise my eyes to fix my gaze on You,
    for Your throne resides in the heavens.
Just as the eyes of servants
    closely watch the hand of their masters,
Just as a maid carefully observes
    the slightest gesture of her mistress,
In the same way we look to You, Eternal One,
    waiting for our God to pour out His mercy upon us.
O Eternal One, show us Your mercy. We beg You.
    We are not strangers to contempt and pain.
We have suffered more than our share
    of ridicule and contempt from self-appointed critics who live easy lives
    and pompously display their own importance.
~ Psalm 123:1-4, VOICE ~

Rare. Two of the three Merriam-Webster definitions for the word are, "2a: marked by unusual quality, merit, or appeal: distinctive; b: superlative or extreme of its kind. 3: seldom occurring or found:  uncommon."* 

While a rare disease is certainly uncommon, it doesn't often feel so meritorious, superlative, or of great value. In the United States, a rare disease is any diagnosis or disorder that affects fewer than 200,000 individuals. Although a combined estimated total of 1 in 10 Americans have a rare disease, with that 1 in 10 broken down among nearly 7,000 different diagnoses, life can feel quite isolating. Most people shrug their shoulders and don't think much of it. I have to wonder, What if it were them?

There is so much ignorance and misunderstanding surrounding rare disease in our country. People don't understand that the vast majority of these diagnoses have no cure and most also have no treatment. For example, our daughter's erythema multiforme transformed something like strep throat into an anxiety-inducing, breath-holding illness for us. Every year we wonder if she will be able to escape coming down with it and whether she will be able to use an antibiotic without any allergic reaction. Penicillin in any form would take her life since that is what induced her rare diagnosis.

When there is treatment, the costs tend to be prohibitive. The synthetic blood clotting factor to treat our son's severe hemophilia runs nearly $30,000 per month. With only 17,000 Americans affected by this bleeding disorder, the pool of patients just never seems to be large enough to recover above and beyond the research and development costs to return a decent profit for the drug companies. As a result, patients pay through the nose for product. 

Fighting these challenges is hard enough but then there are the social difficulties of rare disease that wound the heart. There are many people who think our kids should be aborted or have no right to live. They look with disdain on the amount of resources it takes to keep the 10% alive, thriving, and functioning to the best of their ability. It's easy to feel marginalized when this is how 90% of the population views you or a loved one.

That's why World Rare Disease Day is always such a blessing. In 2014 the empowering slogan,"Alone we are rare. Together we are strong," was used by Rare Disease Day US. It aptly described how this one day a year makes those of us in rare diagnosis groups feel a bit less "uncommon." Our voices are united as we call out to the rest of the world for help. Together we educate untold masses. We speak to the importance of research, treatments, and financial support of families living with rare diagnoses. And we definitely affirm the lives of each and every person with an uncommon chronic disease.

My prayer is always that each unaffected person would learn more about the rare disease community, that they would care about us, and that they would offer support. Our God is the God of Redemption. He not only saved us from the consequences of sin. He can also use a difficult situation to create something remarkable and beautiful. Let's all pray together this Rare Disease Day that we would have the encouragement of seeing that become a reality.

PRAY: Loving Father, build awareness, love, and support for your rare jewels. End the isolation. Increase the encouragement. And always keep us rooted in the hope that only You can provide.


To join us studying Wendy Heyn's SHOW ME YOUR MIGHTY HAND on Facebook in honor of Rare Disease Day, please register at https://form.jotform.com/70227730664152.

Check out our Facebook Event at https://www.facebook.com/events/715486001942606/ to observe and celebrate the day with us as well!

*Merriam-Webster Dictionary online https://www.merriam-webster.com/dictionary/rare

1 comment:

  1. Thank you for posting this. It is encouraging to me.

    ReplyDelete