Admit it. You never outgrew Halloween.
Oh sure, you may not be able to score those sweet fun-size candy bars from the neighbors anymore (at least not without getting a few raised eyebrows or the occasional stink-eye)…but that doesn’t mean you can’t dress up and let your imagination run free!
You can do the same thing for your chronic disease or condition.
Let’s dress up your disease as something spooky…and take a moment to remember that in comics and movies, even the most unstoppable villain has a secret weakness.
ANKYLOSING SPONDYLITIS as FRANKENSTEIN
Stitched together from bits and pieces, Frankenstein’s monster shuffles stiffly around, his mobility limited and his motion slow and jerky. People with Ankylosing Spondylitis can relate; AS is pieced together from overlapping arthritis disorders, and it plaques people with spine stiffness and lack of mobility. But don’t get cocky, AS: There’s a mob of villagers wielding pitchforks and torches to halt you in your tracks! Or, in your case, diet and exercise. (link to our article)
PI (CVID/CGD/SCID/PIDD) as JIGSAW
A sadist with a diabolical love of traps, Jigsaw loves to keep his victims guessing with his mazes and ominous clues while tormenting them. PI would feel right at home as Jigsaw—by weakening people’s immune systems, it leaves them vulnerable to a multitude of infections, and the clues it drops make it hard for doctors to find out exactly what’s wrong. Still, hope may be in sight: Just as Jigsaw’s franchise is running out of steam, doctors are closing in on new ways to identify and treat the different types of PI.
HAE as DR. JEKYLL AND MR. HYDE
Mild Dr. Jekyll developed a potion that unleashed his monstrous alter ego: Mr. Hyde. HAE might find it funny to dress up as the swollen Mr. Hyde, but people living with HAE don’t find anything funny about the way their own bodies swell, or the symptoms that accompany it: Confusion, excruciating abdominal pain, nausea, and vomiting. Unlike Dr. Jekyll, though, HAE patients can turn to modern “potions” to banish their own Mr. Hydes before the transformation can take place.
CAPS (FCAS/MWS/NOMID) as MR. FREEZE
Dr. Victor Fries adopted the villainous persona of Mr. Freeze after a lab accident left his body in a state of permanent cold. The CAPS family of diseases would feel right at home with Mr. Freeze’s containment suit and ice gun. CAPS diseases are characterized by chills and periodic fevers, along with a host of other painful and sometimes debilitating symptoms. While Batman is usually on hand to lay down the law with Mr. Freeze, CAPS patients can reach for their own personal Batarangs: Medications that target interleukin-1.
DYSTONIA as ZOMBIES
The horror of being turned into a distorted mirror version of you has probably done a lot to fuel the rise of zombies in popular culture. For people living with dystonia, bodily distortion is an everyday reality. Involuntary muscle contractions can cause slow repetitive movements, abnormal posture, or tremors that leave people feeling fatigued and worn out. While zombies hunger for flesh (or brains…your zombie’s tastes may vary), people with dystonia hunger for something to make them feel more like themselves. Luckily, there are more options today to help them feel like they’re back in the land of the living.
GLUT1 DS as THE WITCH FROM HANSEL AND GRETEL
For the parents of children with GLUT1 DS, the disease can take the form of many monsters, all of them terrifying. And few creatures target children with such malevolent glee as the voracious witch from Hansel and Gretel. While the witch in the candy cottage fattens children up to prepare them for her plate, diets with high fat foods are actually the best way to help children with GLUT1. And eventually, scientists will find a way to push the GLUT1 witch into her own oven!
ACROMEGALY as THE HULK
Exposure to a massive gamma ray blast triggered a genetic change inside Doctor Bruce Banner. Now, during times of extreme stress, he transforms into a huge green monster, growing larger and stronger the angrier he gets. People with acromegaly might be able to relate. The release of too much growth hormone can result in increased height and larger hands, feet, and faces. Like the Hulk, acromegaly is deeply misunderstood—unlike the Hulk, though, there are treatments available to help soothe the savage beast.
BEHCET’S as MEDUSA
No creature could do as much damage with a single glance as Medusa the Gorgon—one tilt of her snake-infested head could turn a man to stone. Behcet’s could easily dress up as a Gorgon, because Behcet’s patients might feel just as cursed as Medusa thanks to the uveitis, iritis, and other forms of eye inflammation caused by the disease. Medusa’s reign of terror ended when her head was lopped off—fortunately, Behcet’set’s sufferers don’t need to take such drastic measures. Oral and topical treatments can help lessen the discomfort and pain resulting from their inflammation.
CRPS/RPS as PINHEAD
Those needles on Pinhead the Cenobite leader look super painful, but this creepiest of creepers proclaims he cannot differentiate between pain and pleasure. For people with CRPS/RPS, there’s no such confusion. The constant and prolonged pins and needles feeling; the burning sensations; the changes in skin color, temperature, and swelling in the affected area—these pains can make patients feel like human pincushions. Unlike Pinhead, there’s no need to embrace the pain of CRPS/RPS, not when there are exercise therapy and other treatments to help relieve some of that chronic pain.
SARCOIDOSIS as BANE
The criminal mastermind Bane was so powerful, he nearly succeeded in killing Batman! But Bane had a secret: His complex, voice-muffling mouthpiece provided a steady flow of medication to stave off a series of painful side effects. People living with Sarcoidosis may not need to wear a drug-pumping surgical mask, but they’re all too familiar with how the growth of tiny collections of inflammatory cells can cause painful symptoms attacking their lungs, lymph nodes, eyes, and skin. While Bane felt the need to lash out at the world, Sarcoidosis sufferers can take comfort in knowing scientists are working around the clock to learn more about the disease and discover new treatments.
NARCOLEPSY as FREDDY KRUGER
As every child of the 1980s will tell you, sleep became a lot more nerve-wracking ever since the introduction of Freddy Kruger. This dream monster attacks you when you sleep, turning your own worst fears against you. Narcolepsy is a sleep monster of a different sort. It turns people’s bodies against them, causing episodes of excessive daytime sleepiness, fatigue, and the inability to get the rest they need. Fortunately, with the right treatment, this sleep monster’s rampage can be brought under control.
FH as COOKIE MONSTER
Alright, so Cookie Monster may not be evil per se, but he’s probably set more than one toddler on the path to horrific gluttony. As anyone with FH will tell you, the old “violently eating every sweet in sight while screaming om nom nom” trick won’t help when your body produces higher abnormally high cholesterol and triglycerides. FH patients have to be conscious of what they’re eating (and how much) while taking medications to bring those high cholesterol numbers down. And they always have to be on guard for the voice in their head whispering: “Coooooookie!”
HAPPY HALLOWEEN EVERYONE FROM PATIENT WORTHY!
