Yes, it is February 29th–Rare Disease Day–and I’ve got a dozzie! Well, three dozzies actually.
I get migraines, but not just migraines: I have classic migraine with auras. All the auras. What’s an aura? Auras are weird things that happen before you get the actual headache: flashing lights, mood swings, phantom smells, strange sensations. Lights hurt. Sounds hurt. Heck, if a bad one is coming, people’s faces start to look weird, kind of cubist. But migraines, even migraine with aura, aren’t all that rare. About 1 person in 10 gets migraine headaches.
I also have Celiac Disease. This is an autoimmune disorder where eating wheat, barley, rye and probably oats turns on the immune system and tell it to attack the lining of the small intestine. Even a tenth of a crumb of toast every day can start to destroy the small intestine. I never, ever, knowingly eat any of those bad grains.
Experts used to think Celiac Disease was rare and found only in skinny, malnourished children with diarrhea. Not necessarily so. Celiac Disease leads to all kinds of weird symptoms of malnutrition. B-vitamins, calcium and essential fats are lost first. Celiac can mimic all kinds of things and lead to serious long term consequences, even death. About one person in every 100 has Celiac Disease.
But along with all that annoying bother, I also have a really rare disease: Periodic Paralysis (or PP for short). We’re talking really rare here–maybe one person in every 100,00o has Periodic Paralysis. While I don’t usually end up completely paralyzed, I often loose my hands from too much typing, and often have days where I am weak or feel flat. I feel flat because my muscles are half paralyzed. Long term, PP can destroy muscle cells, especially muscles in the upper legs–you know, the ones we need to walk! Triggers include cold, heat, exercise, stress/excitement, eating too many carbs, not eating enough food, heck, I’m pretty sure sun spots and the phases of the moon can throw me off. PP affects everything I do, every plan I make, every dream I dream. The main character in my “Hotel Du Monde” mysteries has Periodic Paralysis.
So, as you go about your day, spare a thought to those living with a rare disease. Rare disease or not, sometimes life sucks. If you can, please take a moment today and light a candle to all who suffer, but are not comforted.
Remember those who suffer but are not comforted.