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.
Everyone in America can probably tell you that before this momentous occasion, the number one seeds had gone 135-0 in these first round games against number 16 seeds. Nobody mentioned that was the first time that happened in the 79 year history of the tournament. One can argue that there have not been 16 seeds for all those years. For the first 12 years there were only 8 teams invited to play in the tournament. The current four region, 64 team, 4 round format (excluding the 4 team preliminary play-in round) was initiated in 1985. Even so, that’s been 33 years, over 50% longer than most of the kids playing in the tournament have been alive.
The ultimate good job is winning the championship. The NHL hockey championship tournament is a grueling event. After an 82 game regular season, the top 16 teams (8 from each conference) play a four round best of seven elimination tournament. It takes twenty winning games to win the championship. That’s nearly 25% as long as the regular season. It could take as long as 28 games to play to the finish. That’s like playing another third of a season. After each round only one team moves on. And for each round, every year, for as many years as the tournament has ever been played, and for as many years as the tournament will ever be played, when that one team wins that fourth game and is ready to move on, they and the team whose season has ended meet at center ice and every player on each team shakes the hand of his opponent player and coach, wishing them well as they move on and thanking them for a game well played. No gloating. No whining. No whimpering. Only accepting.
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