Today, the last day of February, is Rare Disease Day. I (Ron) suppose the date is so chosen because “Thirty days hath September…” (you know the Mother Goose rhyme).
In case you forgot about Rare Disease Day, don’t feel badly. Had our friend Bethany not written us today, we probably would have missed it, even though we live with rare disease every day.
Because of the rarity, there doesn’t seem to be a clear color associated with its observance such as pink for breast cancer. Another one familiar to us is purple for epilepsy. For Rare Diseases, some wear black and white stripes. Others blue or blue jeans (genes).
Kari’s (and Ryan’s) rare disease is called RARS2. There are 50 or so in the world who are known to have this genetic defect. It was first identified fully in 2016, making it both rare and recent. Kari is even more rare in that she, at 38, is the oldest known individual (by quite a bit) with this particular mitochondrial disease. 80% die prior to age ten.
We all would prefer good genes of course. For example, I was very happy to learn that I am not a carrier of the recessive gene for cystic fibrosis (from which my brother died).
“Eugenics (from two Greek words for ‘good’ and ‘gene’) is an immoral and pseudoscientific theory that claims it is possible to perfect people and groups through genetics and the scientific laws of inheritance.” The goal is to fix evolution’s deficiencies. Put another way, eugenics is designed to help evolution along since “survival of the fittest” eventually wins out in that schematic, doesn’t it, so why not achieve that more quickly?
Because of eugenics’ association with Nazis, the word has fallen out of favor. That doesn’t mean the idea isn’t still with us. By the way, Hitler didn’t come up with his ideas on his own. In “Mein Kampf,” he referred to American Eugenics.
Some rare diseases are “becoming increasingly rare.” Sounds like a good thing, right? Here is one reason why this is true: “The prevalence is decreasing due to increased awareness of prenatal ultrasound scans.” Yes, that is a nice way of saying we can prevent “bad births” through identification and elimination.
Do we want to think about any of this stuff? Probably not. Frank, I don’t. I just want to recognize the day because Kari is super precious to me and I want her situation not to be overlooked. But there is more, and it is critical.
Remember the poem “For Whom the Bell Tolls” by John Donne? No man is an island. We are all bound together. Whenever we devalue the least of these, for whatever reason, we devalue ourselves. On the other had, as we celebrate those more negatively affected (when things aren’t as well as we’d like regarding health of our genes), we remind ourselves that we are all fearfully and wonderfully made.
joyinaforeignland.com 