Patient Worthy Memes

Repost from @autoimmunegai : “Today is World Na

Repost from @autoimmunegai :

“Today is World Narcolepsy Day! 🖤
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While most people have heard of narcolepsy, many will be surprised to learn how much remains unknown about this rare sleep disorder.
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🩺 Common symptoms are excessive daytime sleepiness, profound drowsiness, hallucinations, and sleep attacks. People with narcolepsy might also suffer from sudden loss of muscle tone when they experience an extreme emotion (an occurrence known as cataplexy). There isn’t a “classic” case of narcolepsy - each one is unique.
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Although symptoms can be markedly intense and debilitating, narcolepsy is often mistaken for more common conditions- such as depression and insomnia. Because of its puzzling appearance, the average timeframe for receiving a narcolepsy diagnosis is 7 years‼️
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There is no known cure, but certain medications and lifestyle adjustments are aimed at helping to improve symptoms.
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It is unclear what causes narcolepsy. However, recent research has resulted in mounting evidence that narcolepsy is an autoimmune or autoimmune-related disease. This is a promising lead, but researchers will need to dig even deeper for definitive answers. The more that is known about narcolepsy, the closer we’ll move towards developing more effective treatments and support.
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Raising awareness is one step to ensuring a brighter future for those who are affected by narcolepsy 🌞💙”

You have symptoms because of your disease. You nee

You have symptoms because of your disease. You need a sick day because of your disease. You are not responsible for your disease. You just experience it.

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#raredisease #chronicpain #chronicillness #spoonie #enfermedadesraras #enfermedad #enfermedades #enfermedadesautoinmunes #enfermedadescrónicas

I still feel my pain each day when I don’t compl

I still feel my pain each day when I don’t complain. I’m not numb, I’m feeling my symptoms day in and day out.
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#raredisease #chronicpain #chronicillness #spoonie

Chronic illnesses can be so finicky. Sometimes the

Chronic illnesses can be so finicky. Sometimes they flare up just when you need them to least! It’s normal to feel frustrated. Even uncomfortable feelings need to be sat with.

Thank you @colourblind_zebra for this graphic!

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#raredisease #chronicpain #chronicillness #spoonie

REPOST from @rana2.0: “🎨Recently I started

REPOST from @rana2.0:

“🎨Recently I started up a new project offering discounted ($25)portraits for black disabled folk 💖 I am also taking donations from people who have extra funds and would like to sponsor a portrait for a black disabled folk who can’t afford a portrait of themselves. Swipe the next slide to see what my project is all about and why I started it. Black disabled lives matter. We more than matter. We are beautiful and deserve to be seen. ✨ I am very excited to start if off with sharing this portrait and story of the lovely @nolimitsg2 READ HER STORY BELOW ❤️🤗
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“Hey everyone! My name is Gabrielle and I’m from Louisville, Kentucky. I just started college and am majoring in music therapy! I have a neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 2. It’s a lot of science stuff that is involved in why I have it but basically I am missing the SMN gene (survival motor neuron) from one of my parents. (fun fact: this month is SMA Awareness Month☺️) Because of this my muscles are weaker than an able bodied persons and will continue to get weaker without treatment. Because of this I have never walked and use a wheelchair. (My theme song is Ridin by chamillionare). I do offer rides on the back but they are not free. I don’t have a license to drive it and there is no speed limit 👩🏾‍🦼. SMA has taken a lot but also given a lot too. I’ve met some amazing people through this community. I have anxiety mostly because I think about what the future will look like for me.
Sometimes I struggle with why I have my disability, some days are super tough for me and in those days I pray a lot because I know the Lord’s plan for me is good. Rainbows come after rain and I know the sun will shine again. I love to sing and paint. I’m very outgoing and goofy but it takes me a while to warm up to new people. I love dogs and have three of my own. I love making new friends so feel free to hmu🥰”
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Thanks so much for sharing your story with us Gabrielle. It has been so great connecting with you 🤗 sending you lots of love and spoons 🥄”

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#raredisease #chronicpain #chronicillness #spoonie #disabled #chronic

“You’ve got to believe in your science and for

“You’ve got to believe in your science and for us that was a no-brainer because there was really nothing else out there, and the science that we did have made total sense.” On our podcast, “Wait how do you spell that?”, Neena Nizar talks to Ilana about her experience with an ultra-rare disease, 3 of the 10 known patients are her and her sons. She has made it her mission to progress the science, she speaks to Patient Worthy about how.

Link in bio and on our website ☝️☝️

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#raredisease #chronicpain #chronicillness #spoonie

#invisibleillness are soo real! There is no legiti

#invisibleillness are soo real! There is no legitimate way to “see” pain, whether you’re a doctor or acquaintance, it’s best to believe the person. I don’t need to show you my pain to feel it.

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#raredisease #chronicpain #chronicillness #chronicillnesswarrior #enfermeras #enfermedadesraras #enfermedadcronica

At least I know what day it is 🤷‍♀️ Than

At least I know what day it is 🤷‍♀️

Thank you @chronicillnesshumor for this post!

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#raredisease #chronicillness #chronicpain #spoonie

A reminder that sometimes, we can be comfortable i

A reminder that sometimes, we can be comfortable in sickness and uncomfortable in wellness. It’s natural to habituate and come to feel comfortable in your health routine. It takes time to recover and change in many senses of the word.

Thank you @worrywellbeing for this post!

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#raredisease #chronicpain #chronicillness #spoonie

We’re brought together in our small patient grou

We’re brought together in our small patient groups, resulting in less study and understanding. How we have 5% of rare patients with treatments- when will the rest of us follow?

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#raredisease #chronicpain #chronicillness #spoonie

Some with millions of patient, some with just one.

Some with millions of patient, some with just one. Diseases are diverse, patient experience within a disease similarly. To have a disease can mean many things, all brought together by needing to give extra care to our bodies.

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#raredisease #chronicpain #chronicillness #spoonie

When I say my tiredness is chronic, that doesn’t

When I say my tiredness is chronic, that doesn’t mean I need a nap. A chronically ill person feels a tired that doesn’t need sleep, but constant care.

Thank you @spoonie_village for this post!

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#raredisease #chronicpain #chronicillness #spoonie

You can be optimistic and accepting, embrace your

You can be optimistic and accepting, embrace your health circumstances and your illness, and still feel the immense loss, pain, and difficulty. It’s not negative, it’s honest.

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#raredisease #chronicpain #chronicillness #spoonie

One diagnosis is full of indefinite stories, a dis

One diagnosis is full of indefinite stories, a disease will impact each person uniquely.

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#raredisease #chronicpain #chronicillness #spoonie #enfermedadesraras #enfermedadcronica #enfermedadesautoinmunes

We are your neighbors, postmen, and doctors. We ar

We are your neighbors, postmen, and doctors. We are together in our rarity.

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#raredisease #chronicpain #chronicillness #spoonie

Our best is subjective and fluctuates. Today’s c

Our best is subjective and fluctuates. Today’s challenges may be harder than yesterday’s, and your strengths and weaknesses come out in unique and specific ways.

Thank you @teenagers_with_athritis_ for this post!

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#raredisease #chronicillness #chronicpain #spoonie

Rare diseases are .. complicated. 😬 It’s okay

Rare diseases are .. complicated. 😬 It’s okay to feel a whirlwind of emotions and pain and joy at once.

Thank you @spoonie_village for this post!

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#raredisease #chronicpain #chronicillness #spoonie

Disabilities are spectrums, abilities are diverse.

Disabilities are spectrums, abilities are diverse.

Thank you @colourblind_zebra for this graphic!

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#raredisease #chronicillness #chronicpain #spoonie

Everyday with a chronic disease is a different sto

Everyday with a chronic disease is a different story that we try to weave into a narrative and describe our average from. The truth is today my disease is much harder than yesterday, and my best effort will look different too. It’s okay for your best to be less than it was.

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#raredisease #chronicpain #chronicillness #spoonie #enfermedadesautoinmunes #enfermedadcronica #enfermedadesraras

@ogrefairy beautiful work of her and her partner.

@ogrefairy beautiful work of her and her partner. ☁️

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#raredisease #chronicpain #chronicillness #spoonie

Brain fog 🤫☁️ Thank you @felissabumblehead

Brain fog 🤫☁️

Thank you @felissabumblehead for this comic!

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#raredisease #chronicpain #chronicillness #spoonie

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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.

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