Make Mine Rare. Or Not

February 28, 2019February 27, 2019Michael 10 Comments

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.

RDDay 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.

NKmonth

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.

Those Who Can, Do

January 12, 2015January 11, 2015Michael Leave a comment

The latest community college non-credit course catalog is out. We have taken advantage of our community college offerings for years. Dance classes, photography classes, pasta making classes, wine pairing classes, even Italian for tourists classes have seen us on their rosters. Subjects that were just plain fun. But this semester, things aren’t headed in the direction one usually associates with adult education. Certainly not with Just Plain Fun.

There are still some courses that are useful, practical, and add to the enjoyment of everyday living. Gardening classes, painting classes, and writing classes are still being offered. The more casual language classes seem to be a casualty of downsizing. No longer is there “[Insert Your Favorite Foreign Language Here] for Tourists.” If you want to learn “How to Play [One of Any Number of Previously Offered Musical Instruments Other Than Guitar or Piano]” you’ll have to do it at the local music academy. Fortunately, “Freshwater Fishing” is still offered. (No, that isn’t a typo.)

Perhaps I should explain the “Italian for Tourists” class. You’re probably saying to yourself, “I’ve read every post these people have put on this blog. There are trips to Puerto Rico, to maple festivals (whatever those are), unspecified distant time zones, and Niagara Falls. There are trips by plane, tram, car, and shuttles. There are no trips to Italy.” And you would be right. There are no trips to Italy. But there have been trips to southern Florida and the general concentration of Italian speakers there is eclipsed only by that of Spanish speakers. Not that anybody actually speaks Italian there. But I digress.

There are some new offerings in the community college Community Education Catalog this year. For the more sensitive type there are now offerings in “Chakra Balancing,” “Contacting Your Spirit Guides,” and “Psychic Development.” Another new offering is “Turn Your Pain into Peace.” I read the course synopsis and nowhere is bourbon mentioned. If you’re going to turn pain into anything, bourbon is pretty much essential. Of course without any home beer making, wine making, or spirits making (the potable type, not the ones that require guides), the essentials seem to have become superfluous. That must be why they no longer call it “adult education.”

There is one new course that sounds interesting – The Business of Blogging. According to the course description you turn a blog into a profitable business. Hmm …

Now, that’s what I think. Really. How ‘bout you?

Testing, Testing, 1,2,3

September 27, 2012October 3, 2012Michael Leave a comment

SAT reading scores are at their lowest in forty years. In our state, standardized tests were first reported to be so low that more schools did not meet minimum standards set by the Department of Education than those that did. A few weeks after that report was released we were told things weren’t that dire; whoever wrote the report reversed the math and reading scores. In fact, there were just as many schools that met the standards as there were those that did not.

If it only stopped there. Another few weeks had gone by and then there was a cheating scandal that broke out. Apparently teachers were taking tests for students who did not show up in an effort to raise the average. We’re not certain which is more pathetic – that the teachers only raised the odds to 50/50 to meet standards or that teachers could only raise the average to 50%.

The general feeling is that high schoolers don’t want to, or don’t feel they have to take tests. But once beyond high school, once into the realm of those going to school because they want to rather than have to, once dealing with people who have an investment in their education and in their futures, disappointing results will be rare. She of We works with a woman whose father, now into his eighties, still teaches conversational French to the residents at the care facility where he is also a resident. He often commented that he would have preferred to teach at college where the students wanted to learn rather than at high school where the students wanted to meet their minimum requirements so they could play football.

The disappointing results are not restricted to high schools. Just this week there was a report that several local schools of nursing are in jeopardy because less than 80% of their graduates, the minimum required to maintain the school’s certification, could pass the nursing licensure exam.

While all this is going on, money is pouring into the schools. Even with the recent cuts to education seen across America there are billions being passed through from the federal government. Over $160 billion has been spent by the federal government on K-12 education over the past 45 years. That averages over $3.5 billion per year. Last year Washington sent $25 billion to school.

And yet even at this amount of plus what the states and local districts put into their own education we are not educating. Are the tests to blame? Are we really turning out Einsteins at record paces but nobody knows because the kids can’t take standardized tests. Who hasn’t, or hadn’t, heard someone say “I know the material, I just can’t take tests.” You never hear someone who scored well on his or her SAT say, “I don’t know jack but I know how to pick from a list of multiple choices.”

No, we’re certain that if you know the material you know the material no matter how somebody asks you the questions. It’s time those who are teaching do. If there are cuts to be made let’s eliminate some of the administrative staff. Do we need three assistant principals, two secretaries for each, and a prefect of discipline at the elementary K-3 building? Don’t cut the education programs. We need arts as well as sciences. We needed PE as much as we need Math. And maybe a class or two on how to take tests. Life is full of them.

Besides, if we had to come up with a different way of measuring competency than through testing, we could end up grading student nurses on, well, on nursing. Stick out your tongue and say cheese.

Now, that’s what we think. Really. How ‘bout you?