Today and tomorrow stretch the limits of diseases. Today, as it is every year on the last day of February, is Rare Diseases Day and tomorrow, as does every March 1, begins National Kidney Month one of the most common medical conditions. I am one of the chosen who get to experience both up close and personal.
Rare diseases and kidney diseases share more than just the cusp of the second and third months of the year. What makes a rare disease a rare disease changes a little from country to country. In Europe a disease or condition affecting is considered rare when it affects fewer than 1 in 2,000 people. In the U.S. that consideration is extended to those disorders affecting fewer than 200,000 people in total. Either way, that’s not a lot of people for a disease. There are over 6,000 conditions listed as rare diseases by the National Organization for Rare Diseases (NORD) and Rare Diseases Europe (EURODIS) affecting over 30 million people. Meanwhile, kidney disease affects over 30 million Americans alone. Coincidence? Maybe not.
If you go back far enough all diseases have been rare at some time. The more common conditions like diseases of the kidneys didn’t become less rare because they affected more people. They became more common as those treating them spoke with others treating similar conditions comparing symptoms, patient histories, disease progression, and constants in presentation. Often when enough data is collected it becomes apparent the rare disease wasn’t as much rare as unrecognized. Treatment options and the responses then get shared, refined, retried, and publicized and the goal shifts from just education and proper diagnosis of the disease so difficult with the rare ones to effective treatment and some day eradication of the disease.
Obviously a disease becoming “common” doesn’t automatically mean we know enough about it to say were well in the way to effectively treating or possibly eradicating it. If it did we’d need far fewer fun runs every weekend. The National Kidney Foundation may not face the recognition challenge like NORD and EURODIS but treatment improvements are still badly needed and 30 million people can attest that eradication is not just around the corner.
Sometimes, whether rare or common, the patient gets lost in the struggle to recognize or combat the disease. The rare disease sufferer often suffers in silence while it’s “clear” to his and her friends and coworkers that it’s all in his head or she just complains a lot. The End Stage Renal Disease patient “fortunate” enough to be able to still work is made to feel guilty that he might be a little slower on the day after dialysis even though he got a whole half day off for it, or that she never wants to take a real vacation, just a weekend here or there when she can work it around her dialysis days.
If you know one of the 30 million people with a rare disease or one of the 30 million people with kidney disease or maybe one of each or one with both take some time today and tomorrow to learn what they go through, what they need, or how you can help. If you feel generous, a donation to one of the hundreds of organizations looking to educate people on, or advance recognition and treatment of one the diseases affecting your friend can’t hurt.
But if you’re feeling really generous, give a call to your friend and say, “Hi, can I do anything for you today?” That could be the rare treat that really makes a day.
They’ve raised over $157 million. How much more? Add another $10,621,683.76 from this weekend. That’s short of the $13.4 million record from 2013, and far far less than say the $700 million donated to St. Jude’s Hospital last year but Thon’s overhead is probably a little less also. And you can’t argue that is still quite a total for a bunch of kids just helping out another bunch of kids.
Just over the weekend I was watching the 1974 Best Foreign Language Film winner, François Truffaut “Day for Night.” (Reading maybe as much as watching as my French comprehension was never as good as my high school grades suggested. Hooray for subtitles.) As the credits rolled (before the movie as they should be) after the acteurs, among the équipage, and before the producteur and the réalisateur was “Script Girl,” just like that, en anglais, capitalized, and in quotes.
Another perfectly good word is “exchange.” This word even has the dictionaries agreeing there is little room for ambiguity. “An act of giving one thing and receiving another (especially of the same type or value) in return” is the number one definition in the Oxford English Dictionary, and except for references to where stocks are traded and a short conservation or argument, every reference to “exchange” is pretty much the giving and getting of something similar. Our general use of the word confirms that. Next week, if next week was fifty years ago, elementary school kids across the country will hold a “Valentine Exchange” at school and everybody gives and gets happy heart shaped cards. (Who knows what they do today.) Just a couple months ago at Christmas time you may have participated in a “Holiday Gift Exchange” at work when to keep in the spirit of exchange a dollar amount was stipulated. Even businesses know that to be an exchange a transaction must be of equal value. Gold and jewelry exchanges all over swap fresh money for old gold at a specifically noted “rate of exchange.”
“You mad?” you say? Sort of. More disappointed about what people have come to think is important enough to put their welfare at risk and not just by taking an extra day off. The average super bowl party host will spend as much as the average American family spends on Thanksgiving but mostly on chicken wings and beer. About 1.3 billion chicken wings were consumed Sunday, washed down with 325 million gallons of beer. Some of that beer found its way into people with a history of bad judgement around alcohol. Drinking violations by repeat drunk drivers ordered to stay sober jumps an average of 22% on Super Bowl Sunday, compared to usual Sunday violation rates. The National Highway Traffic Safety Administration (NHTSA) puts Super Bowl Sunday among the deadliest traffic accident days with other “holidays” like Cinco de Mayo and St. Patrick’s Day.
I think everybody in the world (except San Diego) can honestly say “if you don’t like the weather just wait a day, it will change!” but this is ridiculous. It’s also not uncommon. Without trying to annoy the climate change crowd or those who feel climate change is a socialist plot, the world is not made for stable weather patterns. It’s a not quite spherical orb spinning at a not quite constant speed on a tilted axis while revolving around a not consistent heat source on a not quite regular ovoid orbit. If you don’t believe me I give you from prehistory the Sahara Forest, from modem tourism the Great Lakes, and from calendar makers’ nightmares throughout time leap year.
It doesn’t help that there are no federal guidelines for bathroom tissue roll sizes. Double, triple, giant, mega, mega plus, and super were the adjectives in use in that aisle but even when used by the same brands, the same moniker did not represent the same number (numeral?) of sheets per roll. One package of Mega Rolls boasted 308 sheets per roll while another claimed 348 sheets per roll. Double Rolls had either 148 sheets or 167 sheets. None of that made it easier to figure out if 9 rolls for $9.45 was a better value than 12 rolls for $11.45. New math said “x is greater than y when the intersecting sets represent the lesser value of the total compared to the greater value of the sum of the variable(s) represented by the equation,” but old arithmetic said “Hold on there, Baby Bear. That’s not just right.” (If you are trying to follow along without a program, although everybody used it as a basis for comparison, I never found a roll claiming to be “Regular.” Not a good thing not to be amidst all that toilet paper.)
The Real Reality Show Blog 