» On 2/06/2026 03:00:00 AM Mountain Standard Time, Alan wrote:
Rare Disease Day... is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It is observed every year on February 28 (or February 29 in leap years—the rarest day of the year). More than 300 million people around the world live with a rare disease, including me (Myasthenia Gravis), and some of my friends (CIDP, etc.)!

Show Your Stripes: The choice of a zebra as the official mascot for rare disease patients has its roots in an old adage: "When you hear hoofbeats, think of horses, not zebras." This saying was coined in the late 1940s by Dr. Theodore Woodward, as a way of encouraging his medical students to diagnose common ailments, rather than rare ones. It's the Occam's Razor of healthcare. But now we know that 300 million people are actually zebras! It might not be obvious when you look at us, which is why we show our stripes to raise awareness. For those of us with rare diseases, misunderstanding symptoms is one reason why the average time to a correct diagnosis is an agonizing odyssey of SIX YEARS. Showing our stripes together on one day focuses attention on just how many people are touched by a rare disease. Whether you are diagnosed or love someone who is, this community is wider than you think. So save the date and stand in solidarity with the rare disease community on February 28. And don't forget to take photos and share them on social media, using the #RareDiseaseDay and #ShowYourStripes hashtags!


Monetize Your Illness! There's gold in them thar ills...

What Is A Rare Disease?
In medical terms, "rare" defines conditions affecting a small percentage of the population, with specific thresholds varying by region: in the U.S. (population 343,000,000), less than 200,000 people; in the EU, fewer than 1 in 2,000; and the WHO (World Health Organization) marks the baseline at under 65 per 100,000.
WHO: 1 out of every 1,538 people. (100,000/65)
US:  1 out of every 1,715 people. (343,000,000/200,000)
EU:  1 out of every 2,000 people.
These diseases, often genetic, are complex, difficult to diagnose, and typically lack effective treatments, impacting millions worldwide despite their individual rarity. Although they are individually rare, they're collectively common, with 1 in 17 people being affected by a rare disease at some point in their lifetimes. Over SEVEN THOUSAND identified rare diseases currently exist.

Labels: mg, rdd

 
» On 2/01/2026 12:01:00 AM Mountain Standard Time, Alan wrote:
If You Have MG, Stress Is NOT Your Friend. 

My First Autoimmune Episode (children's book forthcoming😉) was in 2006, at the age of 55. My boss was making it impossible for me to do my job, resulting in extreme amounts of stress. My skin responded with hives: big, itchy bumps all over my body.

At first, I didn't know what was going on. I thought it might be a heat rash. And during a two-year period, many different types of doctors tried to diagnose the condition, with no success. But I eventually figured out that I could get rid of the hives by reducing the amount of stress in my life, with hypnosis, meditation, etc.

After that, I stopped thinking about autoimmunity until mid-2022, when I decided to have my cataracts fixed. I didn't know about the possible danger of triggering Myasthenia Gravis posed by the surgery and/or anesthetic. After I developed double vision and a droopy eyelid, several doctors said, "Third-nerve palsy." Then I also started slurring my words, and the docs scared the crap out of me by saying, "TIAs - Transient Ischemic Attacks - warning signs of a full-blown stroke."

In late 2023, I began having urinary problems. Since I wasn't yet aware of the Myasthenia Gravis coursing through my body (misdiagnosed until mid-2025) and all the doctors said I was the right age for prostate issues, they stampeded me into another surgery. I didn't realize the extra pee was just another symptom of MG. So I suffered through an unnecessary UroLift, a procedure that also exacerbated my MG.

I've had two bouts with covid, in 2023 and 2024, and I recently discovered: "A U.K. study in the New England Journal of Medicine found people who fully recovered from mild covid infections experienced a cognitive deficit equal to a three-point drop in IQ." (Since I've had it twice, that's six points I'll never see again. And with MG's infamous "brain fog," my number has probably dropped into the single digits by now. 😉)

The three years (2022-2025) I spent in the dark were extremely stressful, as you can imagine. Not knowing that I had MG was hard on my mental health. But now, with an accurate diagnosis and even half-a**ed medications (thanks to Mestinon's diarrhea and Prednisone's moonface), the stress is slowly flowing out of my life. Along with a sh*tload of poop. 😉

Old Stress Joke: an Explosive Ordnance Disposal guy was asked about the stress involved in defusing bombs. He shrugged and said it wasn't stressful at all: "I'm either right, or suddenly it's not my problem anymore."

Labels: mg