Patient Worthy Memes

Right now there’s a lot of questions about how t

Right now there’s a lot of questions about how to balance freedom and caution when it comes to coronavirus care. If you ignore the protocol to stay home right now, It’s not just thoughtless, but downright dangerous. Prioritizing your comfort and pleasure could come at the expense of someone else’s life. We are all suffering in this and it’s okay to complain, but some patients really need all of our help to keep them safe. As @thewiebelife puts it so eloquently, today your actions have real consequences. Those at risk are not disponible, they’re important, and we need to look after each other. Stay home, save lives. Click #wearethevulnerable for more stories like this, and thank you @thewiebelife for this post. •
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#raredisease #coronavirus #chronicillness #chronicpain #spoonie #livingwithchronicillness

Remember to not be hard on yourself during these t

Remember to not be hard on yourself during these trying times. It’s good to exercise and eat healthy and sleep well, but it’s also okay if want ice cream for dinner or you didn’t have a productive day. This virus is tiring physically and mentally and sometimes it’s hard to do everything that’s good for you. Try to go easy on yourself 🙂

Thank you @how.u.feeling for thoughtful posts like this☝️☝️ ••
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#raredisease #chronicillness #coronavirus #spoonie #chronicpain

Sometimes with rare diseases there is recovery, ot

Sometimes with rare diseases there is recovery, other times there is just acceptance. Understanding and expressing your needs helps you reach a balance that deals with the weight of the ailment. By asking for or accepting help when you need it, you’re respecting your health needs. Be kind to yourself, your loved ones want to be there, and will be happy to be told what they can do to help.

Thank you @worrywellbeing for this thoughtful graphic 🙏 •
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#raredisease #chronicillness #chronicpain #recovery #spoonie

The next episode of our rare disease podcast Wait,

The next episode of our rare disease podcast Wait, How Do You Spell That? is up and ready to keep you company through your quarantine! In this episode, Ilana and Rebekah chat about PKU and the time that Ilana tried to NSPKU’s Diet for a Day Challenge, thinking she’d have a leg up on low-protein eating as a former-vegan— she was wildly wrong. They talk about the challenges of restrictive diets, and why misunderstandings of PKU needs can actually be really dangerous. Also, after many embarrassing stumbles, they eventually learn how to pronounce phenylketonuria. As always, link in the bio- or look for us on Apple podcasts, Google Podcasts, Stitcher, or Podbean.

It’s our second episode of our new podcast Wait,

It’s our second episode of our new podcast Wait, How Do You Spell That? We talk with Anna Laurent about Our Odyssey (a nonprofit supporting young adults with rare diseases and chronic illness), Alagille syndrome (she teaches us how to pronounce it correctly, thank you Anna), and about how hard navigating the struggles of young adulthood is- especially when you have a rare disease- and how important it is to have a support from people who get it. Heads up, this was recorded on site at Rare Disease Day at the NIH and we goofed a bit with the audio. If you’re sensitive to noise, we recommend waiting for the next episode! Link is in the bio- you can also find us on Google Podcasts, Stitcher, Apple Podcasts, and Podbean @_ourodyssey_ @algsalliance

People with invisible illnesses sometimes struggle

People with invisible illnesses sometimes struggle to have their needs understood because they don’t wear them. The uncertainty of today’s new lifestyle effects some people more than others. Some chronic illnesses may present further risk for coronavirus or patients may be unable to access doctors who help them feel better. For this we can take on an extra awareness for our loved ones right now, and make sure people are ok even if they’re not asking for it yet.

Thank you @quotesbychristie for this graphic! •
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#raredisease #coronavirus #invisibleillness #chronicillness #spoonie

@spoonie_village has created this thoughtful set o

@spoonie_village has created this thoughtful set of reminders of how our whole society is now learning health insecurity and fear. This will pass, and when it does, society will have grown a clearer health consciousness. •
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#raredisease #chronicillness #chronicpain #coronavirus #coronavírus #spoonie

Its a strange time in the world and we are all fee

Its a strange time in the world and we are all feeling it. Rare disease patients know well what uncertainty in health means, and how to adapt to the discomfort. We must do it again, but we’re all entering this new world together. •
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#raredisease #chronicillness #spoonie #coronavirus #coronavírus

Hard times can make you even more grateful. We’r

Hard times can make you even more grateful. We’re all experiencing this together, though it may touch our lives in many different ways. Thank you to everyone on the frontline.
Thank you to @revelatori for this thoughtful graphic ☀️ •
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#raredisease #chronicillness #spoonie #coronavírus #coronavirus

It’s always vital to take care of your mental an

It’s always vital to take care of your mental and physical well being, quarantine season just might mean that will need some adjustments. Some rare disease patients are experts on the matter, and we’ve put some of their lessons together. Read our tips to make your time indoors healthy and happy, the link is in our bio ☝️☝️☝️ • •
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#coronavirus #quarantine #raredisease #chronicillness #coronavírus #selfcare

Even if it’s not law, it’s already clear the t

Even if it’s not law, it’s already clear the time has come to stay in your home. You can watch a good Irish movie to celebrate St. Patrick’s!🍀 •
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#raredisease #quarantine #coronavirus #coronavírus #chronicillness

Right now a lot of people are learning how to adju

Right now a lot of people are learning how to adjust to a new normal-- something the rare disease community is only too familiar with. Here are some words from Nolan about living with dystonia.

This time may be a good reminder of basic hygiene

This time may be a good reminder of basic hygiene habits. Wash your hands with soap! Cough in your elbow! Don’t see people when your sick! All good practices now and always. •
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#raredisease #chronicillness #chronicpain #coronavirus #coronavírus #washhands

Here we go: stay in your home, read that book, cat

Here we go: stay in your home, read that book, catch up on FaceTime. Let this be a moment of empathy if you have never experienced this before. We may take our freedom for granted sometimes, it can take loss of it to understand what isolation means.

Thank you @spoonie_village for this graphic! •
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#coronavírus #raredisease #chronicpain #chronicillnessmemes #chronicillness #coronavirus.

We're excited to share the first episode of our ne

We're excited to share the first episode of our new project "Wait, how do you spell that?: a rare disease podcast." In this episode we talk about the power of sharing your story-- but also the importance of making that choice yourself. In the coming weeks, we'll share interviews with advocates we spoke with at rare disease week in DC. Right now, our show is available on Stitcher, Podbean, and the link in our bio-- but we hope to be on more platforms soon.

Hopefully everyone is in the routine of avid handw

Hopefully everyone is in the routine of avid handwashing by now. One thing you may be forgetting is whenever you use your phone, it has all the same germs that you just washed off your hands. Not all cleaning strategies are equal, but one recommended method is using isopropyl alcohol or Clorox wipes (avoid the ports, of course!). Try to be conscientious of your phone’s close relationship with your hands, keep it clean too! •
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#raredisease #chronicillnessmemes #chronicillness #chronicpain #coronavirus #corona #spoonie

Taking precautions for coronavirus isn’t just ab

Taking precautions for coronavirus isn’t just about your risk. Even if some demographics aren’t as threatened, we need to all take care for our friends and family who are at greater risk and we could pass it on to. •
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#raresdisease #chronicillness #chronicpain #spoonie #autoimmunedisorder #autoimmunedisease #coronavirus #coronavírus #publichealth

ALK positive lung cancer is distinct because it’

ALK positive lung cancer is distinct because it’s caused by a genetic mutation in the ALK gene, which normally tells the body how to code for a protein that helps cells communicate. Because of this, it’s unique in its patient pool and treatment options. If you want more information, go to https://www.alkpositive.org/what-is-alk to get some insight. •
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#raredisease #alkpositivelungcancer #alkpositive

What’s my disease, what’s a cold, what’s the

What’s my disease, what’s a cold, what’s the result of not sleeping last night.. I have my theories. 😬

Follow @meme_the_sick_away for cool memes like this! •
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#raredisease #chronicpain #chronicillness #spoonie

It can be so hard to untangle mental health and ph

It can be so hard to untangle mental health and physical health with rare diseases. Rare conditions can often trigger mental distress, which then triggers more physical symptoms. It can be difficult to discern what’s the disease itself and what are effects, but not direct symptoms. Maybe this graphic can help you analyze that!
Thank you to @dlcanxietysupport for this important graphic! •
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#raredisease #chronicpain #chronicillness #spoonie #mentalhealth #anxiety

Being a rare disease patient can be a uniquely iso

Being a rare disease patient can be a uniquely isolating experience, but it doesn't have to be. There are millions of rare patients around the world. Join people from 215 countries and tell your story on Patient Worthy. You are not alone. #raredisease #YouAreNotAlone s/o to @fitniknarcoleptic - read her story on Patientworthy.com

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Nous croyons Les patients atteints de maladies rares sont des personnes et non un diagnostic. Grâce à l’éducation, à la sensibilisation et à l’humour, nous aidons les patients, les soignants et les personnes de soutien en fournissant des nouvelles et des histoires pertinentes et souvent inspirantes.

Nos objectifs sont de partager des histoires, de cultiver une communauté forte, de fournir les dernières découvertes médicales, de connecter les gens et de produire des informations pionnières pour les patients. Aidez-nous à atteindre ces objectifs en nous parlant un peu de vous!

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