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    Patient Worthy Memes

    When David and Melissa Wickham were expecting, the When David and Melissa Wickham were expecting, they were thrilled — it had taken seven years to conceive Maddie.

But the Wickhams faced an unexpected obstacle when they learned that Maddie would be born with an #omphalocele, a rare congenital abnormality. Maddie was born with her liver outside of her body. Even though Maddie has undergone surgery to fix the omphalocele, there are lingering effects. Melissa explains:

“There’s a lot of pressure on her lungs, stomach, and digestive tract. Her heart has shifted. Eating is still an ongoing battle.”

Currently, the Wickham family is running a #GoFundMe to assist with Maddie’s #MedicalCare and support. 

Learn more about the Wickham family and omphaloceles on PatientWorthy.com — link in bio!
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#PatientWorthy #OmphaloceleAwareness #OmphaloceleWarrior #OmphaloceleBaby #OmphaloceleSurvivor #BirthDefects #Congenital #CongenitalAnomalies #RareDisease #RareDiseaseMom #RareMom #immunocompromised #medicaltreatment
    Today is #WorldIBDDay! This year, join the @crohns Today is #WorldIBDDay! This year, join the @crohnscolitisfoundation in saying #GameOverIBD! 

World IBD Day is designed to unite the community in raising awareness of, and research funds for, #CrohnsDisease and #UlcerativeColitis. 

These chronic inflammatory conditions can cause abdominal pain, unintended weight loss, persistent diarrhea, and more. 

To learn how to get involved, check out ideas from @crohnscolitisfoundation — or share your stories below!
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#PatientWorthy #InflammatoryBowelDisease #Crohns #CrohnsWarrior #UlcerativeColitisFighter #UlcerativeColitisAwareness #CrohnsAwareness #CrohnsAndColitis #WorldIBDDay2022 #IBDHasNoAge
    It’s May — and you know what that means! This It’s May — and you know what that means! This month is Amyotrophic Lateral Sclerosis (ALS) Awareness month! 

🔵 ALS is also known as Lou Gehrig’s disease. This rare and progressive neuromuscular disease causes motor nerve cell degeneration in the brain and spinal cord. 

🔵 Symptoms include balance and coordination loss; muscle weakness, stiffness, cramping, and atrophy; and difficulty breathing, swallowing, or speaking.

🔵 ALS is usually fatal within 2-4 years following diagnosis, but it is possible to have a longer lifespan!

🔵 You can get involved through the @lesturnerals and @als. Check out some of their activities and awareness ideas!

If you or a loved one was diagnosed with ALS, what do you want people to know?
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#PatientWorthy #ALS #ALSAwareness #ALSAwarenessMonth #RareDisease #AmyotrophicLateralSclerosis #LouGehrigsDisease #RareDiseaseAwareness #Neurodegenerative #NeurodegenerativeDisease #RareDiseases
    Patients, both children and adults, are being call Patients, both children and adults, are being called upon to consider participating in clinical research trials for classic congenital adrenal hyperplasia (CAH). Without patient volunteers, groundbreaking research and potential solutions can’t move forward. Read more: https://bit.ly/3G0fgGL
    It is important to recognize the symptoms of #meni It is important to recognize the symptoms of #meningitis, as it can turn serious and life-threatening very quickly.

Meningitis is the inflammation of the fluid and membranes (meninges) around the brain and spinal cord. It may have viral, bacterial, fungal, or parasitic causes.

One symptom to look out for? A headache.

Now, a headache will not always signify meningitis. Headaches can be caused by stress, dehydration, weather changes, and other factors.

A headache related to meningitis is often incredibly painful, and comes alongside symptoms such as:

🧠 Vision loss
🧠 Fatigue
🧠 Confusion
🧠 Difficulty speaking
🧠 A high fever
🧠 The whites of your eyes turning red 
🧠 Neck stiffness
🧠 Light sensitivity
🧠 A rash which doesn’t fade
🧠 Seizures 

If you are experiencing these symptoms, please seek emergency care! 

Learn more about meningitis & symptoms to look out for on Patientworthy.com
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#PatientWorthy #MeningitisAwareness #MeningitisSurvivor #BacterialMeningitis #MeningococcalMeningitis #Bexsero #MedicalResearch #ViralMeningitis #FungalMeningitis #ParasiticMeningitis #RareDiseaseAwareness #Symptoms
    For the last 52 years, people with #WilsonDisease For the last 52 years, people with #WilsonDisease have been relying on largely the same treatment options.

However, the treatment landscape has changed with the FDA approval of #Cuvrior (trientine tetrahydrochloride).

Cuvrior is approved for adults with stable Wilson’s disease who are de-coppered and tolerant to penicillinamine.

It should be available for patients by early 2023.

To learn more about this approval and therapy, check out the article “FDA Approved: Cuvrior for Wilson Disease” on Patientworthy.com.
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#PatientWorthy #WilsonDiseaseAwareness #WilsonsDisease #WilsonsDiseaseAwareness #DrugApproval #FDAApproved #penicillamine #Trientine #OrphanDrug #raredisease
    Currently, it is difficult to determine when a rel Currently, it is difficult to determine when a relapse will occur in relapsing-remitting multiple sclerosis. 

However, a precision health company called #Quanterix developed a blood test 🩸 to help predict potential relapses. It works by observing NfL levels and modulation. Higher NfL levels suggest a heightened chance of relapse. 

While this blood test is not yet available, it did receive Breakthrough Devices designation from the FDA. This designation is granted to novel medical devices that have the potential to provide more effective treatment or diagnosis of rare or life-threatening conditions.

This designation also may help bridge a speedier path through the FDA reviewal process.

Learn more and read the article on PatientWorthy.com — link in bio! 
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#PatientWorthy #BloodTest #BreakthroughDevices #MultipleSclerosis #MedicalResearch #MultipleSclerosisAwareness #MultipleSclerosisFighter #RelapsingRemittingMultipleSclerosis #immunoassay #MultipleSclerosisResearch #RareDisease #RareDiseaseResearch
    Today is #WishboneDay — a social movement and aw Today is #WishboneDay — a social movement and awareness day for those with Osteogenesis Imperfecta (OI). 

The aim of Wishbone Day is to raise awareness of the challenges, solutions, and daily experiences of people with OI. 

✨ #OsteogenesisImperfecta, sometimes known as “brittle bone disease,” comprises of a group of inherited disorders characterized by fragile bones. There are four main types: I, II, III, and IV. 

✨ In most cases, COL1A1 or COL1A2 genes cause OI. 

✨ OI is incredibly variable. Some individuals may have many bone fractures while others may experience very few. 

✨ Potential symptoms or features include bone fractures, blue sclera, middle or inner ear abnormalities (and hearing impairment), hypotonia, respiratory insufficiency, or scoliosis. This does not comprise of the full list of features or symptoms. 

Learn more about OI through @oioife @wishboneday 

If you or someone you love has OI, what would you like to share or raise awareness of? Drop the info below! ⬇️
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#PatientWorthy #OsteogenesisImperfectaAwareness #Genetics #GeneticDisorder #GeneticDisease #RareDisease #RareDiseaseAwareness #BrittleBones
    While pursuing her PhD in Pharmacology & Toxicolog While pursuing her PhD in Pharmacology & Toxicology at @uoft, Katheron Intson began working in Dr. Amy J. Ramsey’s lab, studying #GRIN1. 

As she became more immersed in the world of GRIN1, Katheron became aware of a trend within the #RareDisease community: medication comparison.

She decided to develop a tool for parents and families to compare medications and outcomes based on genetic variants — a tool which could sort people into genetic groups and provide aggregate medication information.

That tool? @rarediseaseapp! 

Jessica, a Patient Worthy writer, sat down with Katheron to discuss the process of developing Varient, the importance of data, and the journey to accelerate patients’ paths to rare disease treatment. 

Shares Katheron: “Our goal is to have every genetic disease where people want to manage their symptoms. If there’s a medication for a rare disease already, we still want to know whether that medication is good or not. We want to be able to help everybody with a rare disease. That’s when I’ll be happy.” 

✨Both Part I and II of our interview are now live on patientworthy.com! Link in bio to learn more!✨
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#PatientWorthy #Varient #RareDiseases #RareDiseaseApp #RareDiseaseAwareness #GeneticDisorder #GeneticDisease #MedicalResearch #Interview #Scientist #HealthTech #RareMom #Genetics #UniversityOfToronto
    “You Are Not Alone — Validating the #Caregiver “You Are Not Alone — Validating the #Caregiver Experiencr,” an educational #webinar from @cancercommons, will take place virtually on May 18, 2022 at 12:00pm PT / 3:00pm ET.

This webinar will focus on challenges, strategies, and resources for loved ones of cancer patients — particularly those affected by advanced or metastatic cancer. Cancer Commons’ Director of Patient Services Deb Christensen, MSN, APRN, AOCNS, OCN, will interview several experienced caregivers who have helped their parents, children, spouses, friends, or other loved ones through a variety of challenges, including treatment and #EndOfLifeCare.

This 1-hour webinar will also have opportunities for Q&A!

So what are you waiting for? Head to @cancercommons to learn more about how to register!
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#PatientWorthy #CancerCommons #MetastaticCancer #CancerAwareness #CaregiverSupport #CaregiverLife #MetastaticBreastCancer
    On our website, @coachtom12 wrote a number of tips On our website, @coachtom12 wrote a number of tips regarding how you can feel more empowered living with a #ChronicIllness! 

His tips include:

✨ Being your own advocate — you are the expert in your condition and your life. So make decisions that are best for you. 

✨ Don’t compare yourself to others. Concentrate on your own skills, needs, abilities, and accomplishments. 

✨ Prioritize so that you can do what you need to do — but also rest when you need rest. 

Want to see some more tips? Take a look at Tom’s article on Patient Worthy! *link in bio*

What are some tips you want to share on being empowered with a chronic illness? Drop them below!
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#PatientWorthy #ChronicIllnessAwareness #RareDisease #Empowerment #ChronicIllnessWarrior #ChronicIllnessLife #BeKindToYourself #Dystonia #DystoniaAwareness #ChronicPain #ChronicFatigue
    Today is #UndiagnosedChildrensDay. Together, we ca Today is #UndiagnosedChildrensDay. Together, we can raise awareness about the many children within the #RareDisease community who remain undiagnosed. We hope that, in the future, these children and families are able to find diagnoses. With support and awareness, we can drive the research that will improve lives and outcomes. 
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#PatientWorthy #RareDiseaseAwareness #UndiagnosedChildrensDay2022 #UndiagnosedChildrensAwarenessDay #PINKathon #RareDiseases #GeneticDisease #UndiagnosedButNotInvisible
    #DidYouKnow — today, we’re going to be talking #DidYouKnow — today, we’re going to be talking to you about #trimethylaminuria. 

First described in 1970, trimethylaminuria is a rare disorder of metabolism characterized by a defect in the production of FMO3, an enzyme.

Normally, FMO3 helps convert trimethylamine into trimethylamine oxide. When trimethylamine builds up, it causes a fishy odor that can be smelled or detect on the skin or breath, or in urine. 

This condition tends to worsen with puberty. For women, it also may grow worse before or during menstruation or during menopause. 

Typically, those with trimethylaminuria have no serious or related health issues besides the odor. Some people may have a mild odor while others may have a more severe case. The most serious ramifications of this disorder are social and mental. 

Want to learn more? Head to Patient Worthy and check out our #RareClassroom series. 

And join us next week for more #DidYouKnowFacts! 
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#PatientWorthy #RareDisease #Genetics #GeneticDisorder #AutosomalRecessive
    Do you or someone you love have post-transplant ly Do you or someone you love have post-transplant lymphoproliferative disorder (#PTLD)? Your story matters and should be heard. 

Join @nord_rare for an externally-led Patient-Focused Drug Development meeting on Wednesday, May 4th, from 12:30-4:40pm ET.

During the meeting, you and other members of the community will share your experiences and let your voices be heard.

This meeting is for the patient community, @fda leaders, medical product developers, researchers, and health care providers. 

PTLD is a rare complication of solid organ transplants and hematopoietic stem cell transplantation. It is characterized by the overproduction and spread of too many lymphocytes, classifying it as a lymphoma.

Head to @nord_rare to learn more about this meeting and how you can register!
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#PatientWorthy #PostTransplant #PostTransplantLymphoproliferativeDisease #NORD #NationalOrganizationForRareDisorders #RareDisease #PatientFocused #HealthcareProfessional #MedicalResearch #DrugDevelopment
    Today is AML World Awareness Day, which aims to re Today is AML World Awareness Day, which aims to recognize and raise awareness of #AcuteMyeloidLeukemia. 

🩸 AML is a rare and aggressive cancer of the blood and bone marrow. It is the most common form of acute leukemia in adults. 

🩸 Symptoms of #AML include fatigue, breathlessness, unusual and frequent bleeding, unintended weight loss, frequent infections, and pale skin. 

🩸 This year’s awareness campaign is called #KnowYourDiet which aims to educate people on how to maintain a healthy diet to support your cancer treatment, how gut bacteria changes in those with AML, what gut bacteria affect immune response, and how bacteria can change in response to therapy. 

There are also multiple ways to get involved! You can drop your experience with AML below 👇, share and amplify stories on social media, donate to organizations, and share resources from @knowaml! 
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#PatientWorthy #RareDisease #RareCancer #Leukemia #AMLAwareness #AcuteMyeloidLeukemiaWarrior #KnowAML #BloodCancer #BloodCancerAwareness #BoneMarrow #BoneMarrowCancer #healthydiet
    Today, April 19, is Congenital Diaphragmatic Herni Today, April 19, is Congenital Diaphragmatic Hernia (CDH) Awareness Day! 

This day is designed to help raise awareness of CDH, fundraise for charities or organizations that are meaningful to you, and amplify and celebrate patient stories. 

✨ Congenital diaphragmatic hernia is a birth defect characterized by a partially formed or absent diaphragm. This allows the abdominal organs to enter the chest cavity, preventing lung growth. 

✨ CDH  symptoms can include difficulty breathing or rapid breathing, a fast heart rate, abnormal chest development, and cyanosis. 

✨ Trestment options include surgical procedures, vented orogastric tubes, and oxygenation monitoring.

To learn more about CDH, check out @cdhinternational @cdhiuk @cdh.international.canada @cdhihongkong @cdhiswitzerland
    Happy Easter 🐰🐣 from your friends at Patient Happy Easter 🐰🐣 from your friends at Patient Worthy!
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#PatientWorthy #Easter #HappyEaster #RareDisease
    Today is #InternationalPompeDay — a day to unite Today is #InternationalPompeDay — a day to unite the community and raise awareness of Pompe disease. 

🧬 The slogan for today is “Together we are strong” because of the strength and passion of the #PompeDisease community! 

🧬 Pompe disease is a rare genetic disorder caused by GAA gene mutations. These mutations prevent the body from processing a complex sugar called glycogen. 

🧬 As glycogen builds up in cells, it causes impaired tissue, muscle, and organ function. 

🧬 Pompe disease symptoms can include muscle weakness, failure to thrive, and heart defects in the classic infantile-onset form; drooping eyelids, cardiomegaly, and progressive muscle weakness in the non-classic infantile-onset form; and progressive muscle weakness and respiratory difficulties in the late-onset form. 

If Pompe disease has touched your life, what would you like people to know? Drop the facts below. 
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#PatientWorthy #PompeDiseaseAwareness #RareDisease #GeneticDisorder #Genetics #GeneticDisease #TogetherWeAreStrong #RaiseAwareness #RareDiseaseAwareness
    Exciting news — the @glut1deficiencyfoundation i Exciting news — the @glut1deficiencyfoundation is holding their quarterly Research Roundtable on Friday, April 22, 2022 from 11am-12:30pm Eastern.

This #Research Roundtable will be a virtual gathering to provide a forum for scientists to share updates on current projects, engage in discussions, and foster collaboration. 

Presentations will also occur from:

✨ Christina Gurnett, MD, PhD

✨ Pierre Magistretti, MD, PhD

✨ Serena Silver, PhD

Followed by Q&A and open discussion. So what are you waiting for? Head to @glut1deficiencyfoundation to learn how to register!
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#PatientWorthy #Glut1 #glut1deficiency #researchrocks #medicalresearch #glut1awareness #glut1ds #raredisorder #raredisease #metabolicdisorder #metabolic #registertoday
    “When you talk about [your condition], a lot of “When you talk about [your condition], a lot of people have questions, and I think those questions are important. It was a wonderful feeling of acceptance having people ask how they could help or what they could do to assist.” 

For @danpez7, growing up with a #chronicillness was not always easy — rather, it was a journey towards self-acceptance and awareness. 

Dan has always been fiercely committed to advocating for himself and the rest of the #raredisease and chronic illness community — whether through legislative action, speaking commitments, or @pop_medicalptsd.

He found himself isolated and frustrated during the COVID-19 pandemic and wanted to make a change — unifying communities, fighting #ableism, and connecting with others. So he wrote “Disposed: A Story of Chronic Illness During the COVID-19 Pandemic.”

Recently, Patient Worthy sat down with Dan to discuss his experience with #aorticstenosis, how to advocate for oneself, and his book! 

*Part 1 of the interview is available now on PatientWorthy.com — Part 2 drops TODAY at 3:30pm ET*
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#patientworthy #chronicillnessawareness #chronicillnesswarrior #writing #disabled #writingcommunity #disposedastoryofchronicillness #rarediseaseawareness #aorticstenosisawareness #aorta #chronicillnesscommunity #chronicillnesslife
    4-year-old Varyusha Maiier is the only person in # 4-year-old Varyusha Maiier is the only person in #Ukraine with a confirmed #SLC6A1 diagnosis. 

Her family is currently working to raise money for an experimental treatment to help their daughter. But with the situation in Ukraine, the loss of income, and their current movement, they are reaching out for help. 

Oleksandra, Varya’s mother, says: “We, as a family from Ukraine, ask you to open your hearts and help our children in the fight against an invisible enemy. We hope for your invaluable help in these difficult times, you people are amazing. Thank you for your kindness.”

Learn more about Varya’s story, SLC6A1, and fundraising efforts in our article on PatientWorthy.com — link in bio. 
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#PatientWorthy #RareDisease #UkraineInvasion #SLC6A1Connect #SLC6A1Cure #RareDiseases #GeneticDisease #GeneticDisorder #MedicalResearch #UTSouthwestern #RareDiseaseAwareness #FundraisingForACause #Fundraising #PatientStories #VaryushaMayer #EpilepticEncephalopathy #Epilepsy #EpilepsyAwareness
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