In a world of noise, begging for your attention, it always seems the largest, loudest, neediest population wins our focus. For example, with the growing statistics on the pervasiveness of autism over the years, why would we, in the special needs community, want to turn our attention elsewhere? The autism community has done a great job letting the world know the statistics and implications. Everyone from Hollywood to the news media is broadcasting far and wide the important story of autism and its needs. That is a wonderful, critical example of effective advocacy and community engagement. But what if your child had a rare disease rather than autism?
World Rare Disease Day is held on the last day of February each year. This day unites with one voice caregivers, families, researchers, and providers of the estimated 7,000 known rare diagnoses. Some of the rare diseases you may have heard of include Cerebral Palsy, Juvenile Rheumatoid Arthritis, Duchenne Muscular Dystrophy, and Spina Bifida. Each advocacy organization involved with these rare disorders comes together to create a larger, louder voice for the serious needs that they have in common for this one day.
The organization I lead has been a partner in this observance almost since its inception. I became aware of World Rare Disease Day because I have a son with a rare diagnosis, Hemophilia A - Severe. One of the largest sub-groups of parents I served emerged as those raising children with a rare diagnosis. Unfortunately, even with that knowledge and this remarkable coming together of causes, people STILL don't seem to understand why they need to know about this day.
So here are my top 3 reasons you need to know about World Rare Disease Day:
1) Those with rare diseases are the most marginalized of any in special needs circles
If people in the special needs community feel left out and isolated, those who have a child with a rare disease feel it that much more. Try telling someone your child has erythema multiforme (IF you can even pronounce it! The ER doc gave my youngest that diagnosis as a toddler.) You won't find a support group at your local hospital for things like Dandy Walker Syndrome. Furthermore, physical appearance can garner more staring for some of these diagnoses. And even in circles that are more welcoming to families like these - such as the wider special needs community - the isolation can be achingly difficult. With no regular protocols and often no treatment, marginalization even occurs in their own peer support groups. Extreme medical fragility and frequent hospital stays leave these families feeling very much on their own.
2) This is where Christian faith and bioethics collide
Nearly every rare disease has a genetic component to it. Bioethics entails the ethical use of science, research, medical therapies, and treatment of disease. Because rare diseases and disorders typically have this genetic component, science has waded into things like gene therapy. Embryonic stem cell lines have been used to develop newer treatments. If we as a wider faith community do not stand beside our brothers and sisters as they wade through the extremely difficult bioethical issues, they will turn to the world. It is easy to despair when you seek God's will in such serious decisions. My own son has made the brave, mature decision that he will not use any of the new therapies coming out to treat his disorder that involve the use of embryonic stem cells. Christians educated on rare disease supported him, helping him to make such a major decision at the tender age of 16. This is where families facing special needs can come together in faith and support to make a huge difference.
3) Everyone knows someone
A disease is defined as "rare" if it affects 200,000 people in the United States or less. Still, we are all still influenced. Because there are so many different rare diseases, about 300,000,000 or 1 in 10 people are affected. Half of those affected are children. Given those statistics, we all know someone who is affected by a rare disease. If you begin to seriously ponder the people in your life who have a rare diagnosis, you might be shocked. (Check out NORD's registry of rare diseases .) Consequently, each of these people has a name, a face, and needs serious support. Are you making the extra time to simply ask a family whose child has epilepsy, "How can I be praying for you right now?" Do you ask the mom whose son is in the hospital again with his cystic fibrosis if you can help with her other kids? These are simple ways we who have faced similar challenges can make a difference.
Those are only 3 compelling reasons we all need to pay attention to World Rare Disease Day each year. These are the very people Jesus cared about as he walked the earth. Shouldn't we all care about them too?
To learn more visit http://rarediseaseday.us/
