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LATEST PATIENT WORTHY ARTICLES

Multiple Sclerosis

The Financial Burden on MS Patients

Knowing how to help treat your disease and being able to afford those needs are two different questions. As reported in Newswise, in a study from Harvey L.

Duchenne Muscular Dystrophy

Kevin Hart Gives a Hand to the Muscular Dystrophy Association As Host of the MDA Telethon

As sourced from BioSpace: After 44 years of the legendary Jerry Lewis hosting the Jerry Lewis MDA Telethon to bring awareness to this disorder, his

Beta Thalassemia

EMA Grants PRIME Designation to CTX001, a Sickle Cell Disease Treatment

CRISPR Therapeutics, in combination with Vertex Pharmaceuticals, has recently announced that the European Medicines Agency (EMA) has granted the Priority Medicines (PRIME) designation for their

Rheumatoid Arthritis

Clinical Remission Versus Imaging Remission in Rheumatoid Arthritis

by Lauren Taylor from In The Cloud Copy Rheumatoid arthritis (RA) is an auto-immune condition that occurs when the body’s immune system mistakenly targets the

Charcot-Marie-Tooth disease

Charcot-Marie-Tooth disease

Experimental Compound Shows Benefit in Mouse Model of Charcot-Marie-Tooth Disease Type 1A

According to a story from Charcot-Marie-Tooth News, an experimental HDAC6 inhibitor called CKD-504 appeared to restore myelination in mouse and cell models of Charcot-Marie-Tooth disease

Polycythemia vera

ICYMI: Updates on Myeloproliferative Neoplasms

Dr. Naveen Pemmaraju recently interviewed with Targeted Oncology and discussed the many advances in myeloproliferative neoplasms (MPNs) treatment as well as the role of

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RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much.

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Stay vigilant fam! The fight is not over. Many peo

Stay vigilant fam! The fight is not over. Many people in our rare disease community are more susceptible, and for them we must be cautious. Masks are a small cost for a big cause.

Thank you @info4pi for this graphic!

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#raredisease #chronicpain #chronicillness #spoonie #mask #coronavirus

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

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

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