Patient Worthy Memes

Sometimes there’s still a struggle but you’re

Sometimes there’s still a struggle but you’re doing the best you can. When people think they can tell you how you can do better, it can make your efforts seem unappreciated. It often feels best if you just listen. Thank you @bethdrawsthings for this drawing! • • • #raredisease #chronicillness #chronicpain #spoonie

New episode of our rare disease podcast, Wait How

New episode of our rare disease podcast, Wait How Do You Spell That? is now up! We talk to Harsha Rajasimha, the CEO and Founder of Jeeva Informatics Systems about how clinical trials could de-centralize and better meet rare patient needs in the US and in India. You can listen to this episode by clicking the link in our bio or on Apple Podcasts, Spotify, and most major podcast apps.

CALLING ALL RARE ARTISTS: every year, Everylife Fo

CALLING ALL RARE ARTISTS: every year, Everylife Foundation runs rare disease week on Capitol Hill to advocate for rare disease needs. As part of rare disease week, they promote artwork of patients with rare diseases who have an exhibit and earn a prize. If you’re interested, the deadline is October 1, 2020. Best of luck! Thanks to @hcu_network_america for sharing this graphic! • • • #raredisease #chronicpain #chronicillness #spoonie #rarediseaseweek #cysticfibrosis #eds #ehlersdanlossyndrome

As July 4th weekend meets a coronavirus surge, we

As July 4th weekend meets a coronavirus surge, we must keep our vulnerable population on our minds. As the social tide stops wearing masks, we must continue to be vigilant. Holidays will come again, our loved ones won’t, so stay safe for them. Have fun on July 4th with a consciousness of our loved ones who may suffer if coronavirus spreads further. Thank you @ogrefairydoodles for this great graphic! • • • #raredisease #chronicpain #chronicillness #spoonie

The token answer of “good” or “fine” may n

The token answer of “good” or “fine” may not express the truth experience of a person with a rare disease. To be truthful can be expressive of pain and hurt. It’s okay to express the negativity too. • • • #raredisease #chronicillness #chronicpain #spoonie

Hereditary angioedema is a genetic disease that ca

Hereditary angioedema is a genetic disease that causes episodic attacks of intense and painful swelling. If you have HAE with recurring episodes more than twice a month, you may be interested in in a compensated opportunity to share your story. For more information there’s a link in our bio 👆👆 or email contribute@patientworthy.com • • • #raredisease #chronicillness #chronicpain #HAE #hereditaryangioedema #hereditaryangioedemaawareness

Symptoms can be all day every day, they can come i

Symptoms can be all day every day, they can come in episodes followed by health phases overshadowed by anxiety of when the illness will return. It may be a shadow over you, knowing any day you could be triggered into brain fog or tiredness or extra pain. Chronic means it’s always there with you, even when you’re feeling okay. • • • #raredisease #chronicpain #chronicillness #spoonie

Being sick means needing extra rest days to take c

Being sick means needing extra rest days to take care of your illness, and normal rest days to take care of you. If you need a day off, for your illness or for you, take it. You are entitled to your own time. • • #raredisease #chronicillness #chronicpain #spoonie.

It works for some people, not for me 😬I know an

It works for some people, not for me 😬I know an exercise and a good diet and meditation and all of that is good, but I still have a chronic illness, and meditation won’t solve it.?When you’re ill, you don’t necessarily want advice on how to fix it either, even if it helped you 🙏 • • • #raredisease #chronicpain #chronicillness #spoonie

Happy Father’s Day to all of the dads of the rar

Happy Father’s Day to all of the dads of the rare disease world. Today we celebrate the joy and sacrifices of fatherhood and the many rare disease relationships this could matter for. Here’s to you 🥂 • • • #raredisease #chronicillness #chronicpain #spoonie #fathersday #happyfathersday

Chronic illness patients know flare ups are not pl

Chronic illness patients know flare ups are not planned or predictable, making plans flexible to change. Try to be patient with your chronically ill friends, we don’t want to cancel either. Thank you @myfibroandmejourney for this post! • • • #raredisease #chronicillness #chronicpain #spoonie

Taking pills doesn’t make you weak - in fact it

Taking pills doesn’t make you weak - in fact it often keeps you strong. Thank you @meme_the_sick_away for posting this! • • • #raredisease #chronicillness #chronicpain #spoonie

Having a rare disease often means explaining sympt

Having a rare disease often means explaining symptoms of a disease that are unfamiliar to your own doctor. As many RD patients suffer from being misdiagnosed or not taken seriously, making sure you have the right team is fundamental to your health care journey. I hope these tips by @drjenniferlincoln help! • • • #raredisease #chronicillness #chronicpain #patientadvocacy #spoonie

Thank you @greygenetics for making this post about

Thank you @greygenetics for making this post about #menkes disease for fact Friday! This rare disease can be spotted in the first weeks of life to provide optimal outcomes. • • • #raredisease #chronicillness #spoonie #menkesdisease #chronicwarrior

We want to be transparent: we are still learning,

We want to be transparent: we are still learning, and we know we’re not the right people to discuss this subject. At the same time, we also know our rare disease podcast would be incomplete if we didn’t address the racism and inequities that Black people face in the healthcare system. We’ve posted a short episode on Wait, How Do You Spell That? with a brief overview of some of the ways our healthcare system doesn’t serve Black people in the US- you can find it through the link in our bio or on most major podcast apps. We encourage you to follow other resources, like the Black Women’s Health Imperative and Black Health Matters— and we hope to one day expand further on these topics individually and with more qualified guests. We’ve included some resources in the episode description. If you have more resources you want to recommend, let us know below!

Rare diseases often change how we imagined our fut

Rare diseases often change how we imagined our future, but life afterwards continues to be multidimensional, full of happiness, sadness, joy, sorrow, silliness, hard work, up down and everything in between. Your disease may be featured in the story, but it’s not the story. • • • #raredisease #chronicillness #chronicpain #spoonie #hae #hereditaryangioedema

🖤 Thank you @hearusyarr for this lovely visual

🖤 Thank you @hearusyarr for this lovely visual • • • #raredisease #chronicillness #chronicpain #spoonie

Rare disease patients know how to carry a heavy lo

Rare disease patients know how to carry a heavy load- there’s usually no other option. If they make it look easy, that’s because they’re strong- not because it’s not weighing on them. Thank you @spoonie_village for this graphic! • • • #raredisease #chronicillness #chronicpain #spoonie

These are just of a few of the many manifestations

These are just of a few of the many manifestations of health care inequality due to race. The intersection of health, gender, and blackness tells a story of not being heard or helped- many rare disease patients can understand the deep impact of that neglect. This week we’ll be focusing on health and patients of color and the ways their unmet needs manifest. Change starts with unpacking the details, lets take a look. Thank you @rememberthegirls for this graphic and @blkwomenshealth for providing more resources! • • • #raredisease #chronicillness #chronicpain #spoonie

Our healthcare isn’t representative, it neglects

Our healthcare isn’t representative, it neglects part of our people. Our people of color deserve justice, it’s time to serve them. Read our article about our need to take care of people of color in our bio. By the way- you can help. • • • #raredisease #chronicdisease #chronicillness #spoonie

People are comparing coronavirus restrictions to p

People are comparing coronavirus restrictions to people who already lived with restrictions these days. In truth, people are finally experiencing the limitations that germs put patients at risk for everyday, but it’s one part of the story. Another part of disease is the ‘chronic’ part, which is relived each day. Thank you @realmirandahart for this thoughtful graphic! • • • #raredisease #chronicillness #chronicpain #spoonie

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