Patient Worthy Memes

Today is Microvillus Inclusion Disease (#MVID) Awa

Today is Microvillus Inclusion Disease (#MVID) Awareness Day!

MVID is a rare genetic disease of the intestine which is inherited in an autosomal recessive pattern. This means that patients must inherit one mutated gene from each parent.
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In patients with MVID, the cells within the intestine do not form correctly. As a result, the intestine cannot properly absorb nutrients and fluid. So MVID causes chronic and severe diarrhea.

Typically, symptoms appear within hours or days following birth, though it can appear as late as a few months later. Symptoms include severe, watery diarrhea; failure to thrive; poor weight gain; and dehydration.
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#patientworthy #microvillusinclusiondisease #genetics #mvidawareness #geneticdisease #geneticdisorder #raredisease #rarediseases #rarediseaseadvocate #rarediseaseadvocate #rarediseaseresearch #medicalresearch #genetictesting #geneticcounseling

Patient Worthy has some amazing patient stories co

Patient Worthy has some amazing patient stories coming out next week, but until then - we’re here to cover some #medicalresearch.
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Recently, a team of researchers performed a systematic review and meta-analysis to understand the link between maternal #smoking and #tourettesyndrome, as well as other chronic tic disorders.

Researchers identified 641 studies related to this topic, performing an in-depth analysis of 7 studies. Altogether, researchers determined that smoking during #pregnancy increased the risk of Tourette syndrome by 35%.
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What is Tourette syndrome (also sometimes referred to as Tourette’s syndrome)? This neurodevelopmental disorder has been linked to a potential mixture of #genetics and environmental factors. Unfortunately, Tourette syndrome is often stigmatized in the media, with many portrayals of people screaming out inappropriate words. However, this is NOT a common tic, nor one that every person with Tourette syndrome experiences. Tics may include head or arm jerking; grunting; repetitive movements; nose twitching; and more. These tics are involuntary movements.
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#patientworthy #tourettes #tourettesawareness #metaanalysis #neurology #cigarettes #pregnancylife #chronicticdisorder

For today’s #TipTuesday, let’s talk about slee

For today’s #TipTuesday, let’s talk about sleep 💤. High quality sleep plays a huge role in overall health and wellness.

BUT an estimated 60% of those with #multiplesclerosis experience sleep disturbances, including #nocturnia (an increased need to urinate during be night), sleep apnea, restless legs syndrome, insomnia, periodic leg movements in sleep, sleep-disordered breathing, or just pain.
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How do you know if a lack of sleep is affecting you? Ask yourself:

Am I grumpy? Am I sleeping under 7 hours each night? Am I excessively sleepy and fatigued?
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How can those with MS have a restful night of sleep? Here are some tips!
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1. Speak to your healthcare provider first and foremost. It may be possible to treat some MS-related symptoms that are interfering with your sleep. When you have this conversation, be sure to discuss any medications you might be on that could be affecting your sleep.
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2. Cut down on the amount of fluid you drink before bed. Also, try to stay away from alcohol or caffeinated drinks, especially in the evening.
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3. Similarly, don’t smoke before bed or in the night.
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4. Invest in some healthy lifestyle changes, such as exercising more during the day (when you can, and also giving yourself rest as needed), going to bed and waking up at the same time, and keeping your bedroom dark and cool. However, avoid heavy exercising within 4-6 hours of sleep.
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5. If you’re struggling with insomnia, or feeling depressed or anxious, think about therapy. Cognitive behavioral therapy (#CBT) can be helpful in finding relaxation.
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What are your best tips for sleeping well with multiple sclerosis?
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#patientworthy #multiplesclerosisawareness #mswarrior #msstrong #mssociety #mssocietyofcanada #multiplesclerosiswarrior #multiplesclerosisfighter #sleeptips #sleep #sleepcoach #autoimmunedisease #myelin #autoimmunewarrior #insomnia #sleepapnea #insomniaproblems #sleepapneaawareness

For this week’s Medical Monday, we’re going to

For this week’s Medical Monday, we’re going to share an advance in the industry. The @who has stated that #alzheimers is the leading cause of dementia worldwide, accounting for up to 70% of cases. Now, researchers from the AI Sector of Kaunas University in Lithuania have created an #AI deep learning algorithm which can predict the possible onset of Alzheimer’s with 99% accuracy.
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Read more on patientworthy.com! This particular story drops today at 1:30pm.
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#patientworthy #medicalmonday #medicalresearch #alzheimersawareness #alzheimersassociation #alzheimersdisease #alzheimerssucks #neurology #neurodegeneration #artificialintelligence #deeplearning #machinelearning #machinelearningalgorithms #artificialintelligenceai #kaunasuniversityoftechnology #lithuania #medicalnews #alzheimerssupport #dementia #dementiaawareness #worldhealthorganization

#Brukinsa (zanubrutinib) is now the second-ever th

#Brukinsa (zanubrutinib) is now the second-ever therapy FDA-approved for patients with Waldenström’s macroglobulinemia. This approval hinged on data from the Phase 3 ASPEN clinical trial.
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More info can be found on our website. Hit the link in the bio or head to patientworthy.com and click on “Waldenstrom Macroglobulonemia” under “Diseases.”
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What do you think of this approval?
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#clinicaltrial #zanubrutinib #waldenströmsmacroglobulinaemia #waldenstromsmacroglobulinemia #waldenstrommacroglobulinemia #medicalnews #waldenstromslymphoma #lymphoma #rarecancer #bloodcancerawarenessmonth #bloodcancer #bloodcancerawareness #bloodcancersurvivor #bloodcancers #bloodcancerresearch #patientworthy #monoclonalgammopathy #monoclonalgammopathyofundeterminedsignificance #rarecancerstory #rarecancerawareness

Each week, Patient Worthy puts out our #RareClassr

Each week, Patient Worthy puts out our #RareClassroom series to discuss rare or underserved conditions. Today, let’s talk #narcolepsy, which is often misunderstood, underrecognized, and misdiagnosed.
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“What is narcolepsy?” — Narcolepsy is a rare, chronic sleep and neurological disorder which affects the brain’s sleep-wake cycle.
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“What causes narcolepsy?” — Doctors do not know the exact cause of narcolepsy. However, #genetics and environmental factors are believed to play a role.
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“Who gets narcolepsy?” — Narcolepsy can affect both males and females equally, and affects people throughout the globe. An estimated 200,000+ Americans and 3 million people worldwide have narcolepsy. Symptoms typically appear before early adulthood.
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“What are the symptoms of narcolepsy?” — Symptoms and severity vary between patients. Some may include excess fatigue and excessive daytime sleepiness; poor sleep quality; abnormal REM sleep; cataplexy; hypnogogic hallucinations; and sleep paralysis. But it is important to stress that those with narcolepsy do not always have all of these symptoms. Additionally, some may experience narcolepsy and #cataplexy, while others have narcolepsy without cataplexy.
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Thanks for joining this week’s Rare Classroom, and learn more on our website!
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#patientworthy #narcolepsyawareness #narcolepsynotalone #narcolepsyproblems #cataplexyawareness #cataplexysupport #narcolepsyandcataplexy #excessivedaytimesleepiness #provigil #neurology #triptil #neurologicaldisorder #sleepdisorder

Repost from: @thechronicallyhonest — “& maybe

Repost from: @thechronicallyhonest — “& maybe I tell you I’m fine because it’s easier than explaining the extent of the pain I feel on a daily basis.”
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Do you understand this feeling?
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#patientsupport #patientworthy #thechronicallyhonest #chronicillness #chronicpain #chronicpainwarrior #raredisease #chronicpainawareness #spoonie

When it comes to #chronicpain, a lot of people thi

When it comes to #chronicpain, a lot of people think it is just physical. But what about the emotional effects? Feeling exhausted and not always being able to do the activities we want. Hearing that it can’t hurt that bad, or we’re too young, or it doesn’t look like we’re in pain. Dealing with a body that hurts every day and still trying to make it through. Chronic pain affects everything.
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What’s your experience with chronic pain?
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Repost from @inflammationvacation
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#patientworthy #inflammationvacation #chronicpainsucks #chronicpainlife #chronicpainsurvivor #chronicillness #chronicfatiguesyndrome #painmanagement

Today’s #wellnesswednesday comes in a repost fro

Today’s #wellnesswednesday comes in a repost from @how.u.feeling.
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As patients, you are living your experience every day. Talking about your pain or struggles can be an act of self-care. Letting yourself feel how you feel can be an act of self-care. Championing your successes can be an act of self-care.
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Self-care comes in many forms. But remember that you are allowed to say what you feel, ask what you want, and advocate for your needs without having to feel like you are seeking attention. You live this every day. Take care of your needs and if that means speaking up, then speak your truth.
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We’re here to listen.
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#chronicillness #chronicpain #raredisease #rarediseases #chronicfatigue #chronicillnesswarrior #chronicillnessmemes #spoonie #spoonielife #spooniesupport #spoonies #spooniecommunity #wellnessjourney #selfcareisforeveryone #selfcare #patientworthy #patientadvocates #rareisstrong #invisibleillness #ableism #lupus #scd #sicklecellawareness

Don’t miss out on the most anticipated conferenc

Don’t miss out on the most anticipated conference on #rarediseases of the year — the #nordsummit on October 18-19. This can’t miss event will provide insight into #genetictesting, #raredisease research, #publichealth, and patient advocacy.
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Interested in registering? Just copy the following link into your browser: bit.ly/3BoJmA9
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#nord #orphandrugs #rarediseaseawareness #chronicillness #medicalresearch #publichealthmatters #geneticcounselor #genetictest #rareisstrong #rareisproud #registernow

Repost from @rheumatoidarthritiswarriors and @msni

Repost from @rheumatoidarthritiswarriors and @msninjaaa 🙌🏼
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Trust patients. Believe patients. Patients are the experts in their condition. 👏🏼
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You know what is best for you. Advocate for yourself. Sometimes it is tiring to have to speak up, to fight to be heard all of the time. I know you are fielding unsolicited advice and options and people who don’t believe you. But keep going. Take time to rest and breathe as you need, but just know:

I hear you.
I believe you.
I trust you.
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YOU are the expert in whatever illness or disease you have. You have the lived experience. Never forget that.
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#rheumatoidarthritis #rheumatoidarthritiswarrior #patientleaders #believepatients #invisibleillness #chronicillness #raredisease #rarediseaseawareness #chronicillnessawareness #spoonie #cysticfibrosis #hemophilia #scd #multiplesclerosis #multiplesclerosisawareness

Cognitive dysfunction or “brain fog” is someth

Cognitive dysfunction or “brain fog” is something that many people with #lupus experience. @lupusorg is running a FREE online educational program on the causes and possible treatments of brain fog, including a discussion with Dr. George Tsokos of @harvardmed and @bidplymouth. Pre-registration is required. Head to @lupusorg to learn more, or simply copy paste the following link into your browser: https://support.lupus.org/site/calendar/737424045?view=Detail&id=103421
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#lupusawareness #lupusfoundationofamerica #lupusfighter #lupusfog #harvardmedicalschool #lupuswarrior #lupuslife

Please join the @imermanangels community as we mar

Please join the @imermanangels community as we mark National Grief Awareness Day. Gather with others in the #cancer community to discuss navigating the world of cancer, #grief, and loss. The conversation will be facilitated by Roy Remer, Executive Director of San Francisco’s @zencaregiving and allow for questions, deeper exploration and resources to help each participant on their own journey. This event is FREE. If you’re interested in registering, leave a comment below (and I’ll send you the registration link), send us a message, or check the PW Twitter or Facebook accounts for more information. Support for grief work provided by @abbvie with support for engagement sessions provided by @walgreens
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#patientworthy #abbvie #imermanangels #zencaregiving #rarecancer #cancersucks #cancerawareness #nationalgriefawarenessday #cancersurvivor

We were thrilled to coordinate with the National

We were thrilled to coordinate with the National Alliance for Caregiving for the creation of their new guidebook for #caregivers of children with rare and/or serious illnesses. The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses, created in partnership with @globalgenes and with support from @MallinckrodtPharmaceuticals, is a comprehensive resource of supports, services and information that will help #caregivers on their caregiving journey. #circleofcare #rarecare
🔗 https://www.caregiving.org/guidebook-for-caregivers-of-children-with-rare-serious-illnesses/

Meet an incredible dad who will run 150 kilometers

Meet an incredible dad who will run 150 kilometers (90 miles) in 3 days to increase awareness of twin complications, & raise funds for research. Follow @twinrunnl 's epic fundraising journey for @tapssupport or paste twinrun.nl in your browser #twinrun #teammart #tapssupport #twinresearch #TAPS

Sometimes I feel so frustrated at how much I’ve

Sometimes I feel so frustrated at how much I’ve pushed through, and also don’t want to explain to everyone. Remember that even if they don’t know how strong you are, you do! 💛

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•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease #cf #parkinsons #fibromyalgia #healing #mentalhealth
#lyme #lymedisease #lymphedemaawarenessmonth #myelofibrosis #bacterialmeningitis #epilepsy

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