If Rare Disease Life had Zodiac Signs

First, I want to be clear– I’m neither a doctor nor astrologer. This listicle is just for fun! Rare diseases are not Zodiac signs, and are tremendously challenging situations to be placed in. Additionally, my understanding of the different signs is primarily based off memes on Instagram, so take everything I say with a grain of salt. With that established, after downloading CoStar to my phone, I’ve started seeing everything through the lens of astrology– and afterall, the saying does go: when life gives you rare diseases, anthropomorphize them and give them horoscopes! So here we go! This is the best I’ve got– if you have better ideas, leave a comment. Outdo me. I’ll love it.

Aquarius (January 20 – February 18) – Ultra-Rare / Undiagnosed Communities

Aquariuses are known for being free-spirited, having a strict set of values, and a noncomformist attitude. Their hobbies are unique; their fashion sense offbeat. They are the Phoebe from friends. One of the fundamental things about them is that they’re unlike anyone you’ve met before. Similarly, many people with rare diseases have conditions so rare that their doctors have never heard of them. Many people live with a wide range of symptoms, but still haven’t found a diagnosis. Like Aquariuses, this community is unique, often misunderstood, and go throughout the world searching for justice. Learn more about undiagnosed communities here.

Pisces (February 19 – March 20)- Newborn Screening

Ah, the emotional, sensitive, intuitive Pisces! One fun fact is that, although I was born a Leo, I spent years telling everyone I was really a Pisces at heart. How could I not be the artsy sign that thinks they’re psychic and cries a lot? Eventually, it was pointed out to me that my audacity to say the stars were wrong was the most Leo thing ever. Anyway, that’s a lead in to say that I do love the Pisces sign– but, due to their aversion to responsibility, they also have a bit of a reputation for being lifelong, weeping babies. You know who else is a baby? Actual babies! And you know what babies need? Newborn screening! Newborn screening helps identify rare, genetic diseases, like adrenoleukodystrophy and Pompe disease. When babies are diagnosed early on, it’s much easier to effectively treat their symptoms. Learn more about NBS here.

Aries (March 21 – April 19)- Advocacy Groups

Aries are passionate, determined leaders who aren’t afraid to put up a fight– and so are rare disease advocacy groups. Advocacy groups lobby, tell stories, propose bills, build awareness, fundraise, connect, and support. They’re brave, feisty, and ready to take action. Learn about some of our advocacy partners here.

Taurus (April 20 – May 20) Learning the Value of Self-Care

Tauruses are stubborn, generous, slightly lazy, and lovers of comfort. They love to nap. They love good snacks. If you’re looking for someone to stay home with and snuggle into a blanket burrito on a rainy day, Tauruses are it. However, taking breaks and enjoying small comforts isn’t a behavior that should be limited to people born in April and May. Self-care is hugely important for all members of the rare community– patients, caregivers, advocates, you name it. It can be tough to find the time, but it helps prevent burn out. Let us all channel our inner-Taurus! Read more about rare disease and self-care here.

Gemini (May 21 – June 20) Co-Morbidities

Restless, unpredictable Geminis get a lot of slack. Because the sign of the twin finds itself pulled in different directions so often, there’s a reputation that Geminis are two-faced. First you think they’re one thing, then you think they’re another. In the rare disease world, co-morbidities can play this dual role. First, your condition is causing joint pain– then it’s dizziness. Then it’s anxiety, or fatigue! You never know what’s next– from a Gemini, or from life with a rare disease.

Cancer (June 21 – July 22) When Someone Remembers Your Specialized Diet

Cancers are the sweetest sign, in my opinion. They’re nurturing and empathetic, and when they’re on a road trip, they bring snacks for the whole car. When you have a rare disease though, you might not be able to eat the same snack as the rest of the car. It’s pretty common for patients to need specialized diets to manage their symptoms, depending on the condition. If you have PKU you might have to avoid foods with protein; if you have epilepsy, you might have found that the ketogenic diet is really helpful. Finding foods when you’re out and about can be tiring, and often it’s easier to just bring your own. But when you’re with a Cancer, you’re surprised and touched to realize: they remembered. They actually brought along the snack that you’re able to eat. Your heart is warmed. We are so lucky to have Cancers in our lives. To read more about maintaining diets to help manage a rare disease, check out this article here.

Also, after writing out this whole thing I realized I could have said Cancers were the sign of CANCER ADVOCACY. I can’t believe I didn’t think of this sooner.

Leo (July 23 – August 22) – Ehlers-Danlos Syndrome in a School Talent Show

I know this is a very specific example, but as a Leo myself, I love making everything about me. Leos are bold, proud, and charismatic. They love to be the life of the party and the center of attention. They love performing. When I was a kid, long before I had ever heard of Ehlers-Danlos syndrome, a disorder that causes joint hypermobility, I knew I could move my body in wild ways. When I was in elementary school, my entry in the school talent show was taking my feet and looping them around so they touched my head, and stunts of that general nature. Later on in life, I discovered this was related to loose joints in my family. Actually, a question on the hEDS diagnostic criteria asks: “As a child, did you amuse your friends by contorting your body into strange shapes or could you do the splits?” Read more about EDS talent shows here.

Virgo (August 23 – September 22) The Huge Binder You Take to the Doctor

Okay, here’s the thing about Virgos. They’re nitpicky, hyper-organized, and maybe mildly controlling– but this is all an expression of love and care. They want to make sure that the people around them are taken care of and are living up to their potential. If they didn’t care about you, they wouldn’t nag. In the rare disease world, Virgos are symbolized with the huge binder that you take to every doctor visit, tracking each test, scan, diagnosis, symptom, treatment, physical therapist, etc., relevant to your or your loved one’s health. The binder is a meticulous, practical, and grand gesture of love.

Libra (September 23 – October 22) ALS Ice Bucket Challenge

Libras are known for being flirty, fashionable, and friends with everyone. They can see different perspectives, love justice, and have trouble making up their minds. When the ALS Ice Bucket challenge went around a few years ago, it was an example of how Libra-ish attributes can be harnessed to help rare disease advocacy. The ice bucket challenge asked that tagged participants film themselves throwing a bucket of ice bucket over their heads and post it on social media– and/or donate to ALS causes. It caught on, in part, because it was fun and flirty. People had an excuse to post a video of themselves in a swimsuit outside. Their friends encouraged them to get involved. It was criticised for many of the same reasons– but in the end, supporters did raise approximately $115 million dollars, which went towards valuable research. Read about ALS research here.

Scorpio (October 23 – November 21) Learning to Deal with Complex Emotions

While ice bucket challenges and talent show entries are all well and good, the rare disease experience is far more complicated. The physical symptoms are difficult, but the emotional challenges are also highly taxing. Scorpios are known for being, well, kind of scary, but that’s a flattening of the archetype. Scorpios are drawn to authenticity and difficult questions, to exploring what’s real and true. They can be reserved and enigmatic, but are ultimately honest and in tune with their emotions. When you’re dealing with a rare disease, there is a Scorpio side to the experience– learning to grapple with hard emotions, grief, and loss. This can mean the loss of a loved one, loss of abilities, of time, of comfort, of the life you knew before. Many people in the rare community find that they suddenly have to face these questions head on– and in these times, there’s comfort in knowing a Scorpio friend, or befriending the Scorpio within yourself. Read about adjusting to change and grief in the rare community here and here.

Sagittarius (November 22 – December 21) – CRISPR Research

Saggitarius is the sign of adventure-lovers and free spirits. This sign loves trying new things, exploring, and also making sure that you know they’re very smart. So naturally, they seem like the sign most fitted to be enthusiasts of cutting-edge research. CRISPR technology helps researchers edit DNA– which is hugely exciting for many people with genetic disorders. While some have concerns about the hype around gene editing and gene therapy, others are working to ensure that safe treatments reach the people who need them. Read about it here.

Capricorn (December 22 – January 19) – Rare Patient Registries

Capricorns are considered practical, hard-working, ambitious, and maybe a little bit nosey. These attributes make them well-suited to run disease registries, which keep track of information provided by patients with a particular disease. While these registries take an organized, diligent approached, they can contribute valuable information to scientists and push research forward. Read about the benefits of patient registries here.

 


Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email
Close Menu