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Click Here To Share Your Story with Focal Segmental Glomerulosclerosis (FSGS)
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Patient Worthy’s Memes

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They were at brunch last weekend, so why can't the They were at brunch last weekend, so why can't they come today? Ability isn't always consistent. Symptoms fluctuate, and yesterday's good day doesn't guarantee today's. Swipe for how to respond with understanding. #ChronicIllness #InvisibleIllness #RareDisease #PatientWorthy
Living with focal segmental glomerulosclerosis (FS Living with focal segmental glomerulosclerosis (FSGS) can come with challenges that extend far beyond managing symptoms. From navigating uncertainty to adjusting everyday routines, every patient’s experience is unique.
We’re looking to connect with individuals diagnosed with FSGS who may be interested in sharing their experiences and helping others feel less alone in their journey. 
Your story matters, and your perspective deserves to be heard. If you or someone you know is living with FSGS, we’d love to hear from you! Click the link in our bio to learn more. 
#FSGS #KidneyHealth #PatientAdvocacy #PatientVoices #ShareYourStory #PatientWorthy
Make the most of your next MASH appointment. 🩺 Pre Make the most of your next MASH appointment. 🩺
Preparing questions ahead of time can help you better understand your diagnosis, treatment options, and next steps. Consider bringing a notebook or using your phone to keep track of questions and important information discussed during your visit.
💙 What question would you ask your healthcare team?
Click the link in our bio to share your story.
#MASH #MetabolicDysfunctionAssociatedSteatohepatitis #LiverHealth #PatientAdvocacy #PatientWorthy #ShareYourStory
Between unanswered questions, long diagnostic jour Between unanswered questions, long diagnostic journeys, and unexpected twists, the rare disease community knows a thing or two about mysteries. This Halloween, let's trade the tricks for moments of joy, connection, and a few extra treats.
 Tag someone in the rare disease community who deserves all treats and no tricks this season!
#RareDisease #RareDiseaseAwareness #RareDiseaseWarrior #PatientWorthy #PatientAdvocacy #ChronicIllnessCommunity
When it comes to kidney health, there's so much ha When it comes to kidney health, there's so much happening beneath the surface.
Conditions like focal segmental glomerulosclerosis (FSGS) highlight the importance of recognizing that kidney disease can affect people in different ways, and every patient's experience is unique.
Greater awareness can help encourage earlier conversations, informed decision-making, and continued research into better treatment options.
Swipe through to learn more about FSGS and help bring attention to this kidney condition. If you're interested in sharing your story, click the link in our bio!
#FSGS #KidneyHealth #KidneyDisease #RareDiseaseAwareness #PatientWorthy
Sometimes, what looks like a small win to someone Sometimes, what looks like a small win to someone is actually a HUGE milestone for someone else. When you understand someone's journey, you realize that progress doesn't always have to be big to be meaningful. Sometimes, the smallest victories carry the biggest stories. 
What's something you've learned to celebrate that others might not realize is a big deal? Let's celebrate those victories together!
#PatientCenteredCare #Compassionate Care #PatientWorthy
Healing isn't about returning to the person you we Healing isn't about returning to the person you were before; it's about giving yourself the grace to grow into the person you're becoming. Sometimes, the hardest chapters of life introduce us to a strength, a peace, and a version of ourselves we never knew existed. 
#HealingJourney #FindingYourself #PatientWorthy
October is Homocystinuria Awareness Month—a moment October is Homocystinuria Awareness Month—a moment to recognize the individuals and families navigating life with this rare condition. Raising awareness can help more people understand homocystinuria, support those affected and encourage meaningful conversations with healthcare professionals. Take a moment this month to learn, listen and share so more people know the name and the community behind it. 
#RareDiseaseOfTheWeek #Homocystinuria #HomocystinuriaAwareness #RareDiseaseAwareness #RareDisease #RareDiseaseCommunity #PatientWorthy
Let's talk FSGS! This week, we're spotlighting thi Let's talk FSGS! This week, we're spotlighting this rare kidney disease through our website and social channels with real experiences, helpful info, resources, and more. Whether you're a patient, a caregiver, or just here to learn, follow along with us! Have a story to tell? Use the link in our bio to get in touch. #FocalSegmentalGlomerulosclerosis #FSGS #KidneyDisease #Advocacy #PatientWorthy #ShareYourStory
Managing & Treating oHCM 💙 Living with obstructive Managing & Treating oHCM 💙
Living with obstructive hypertrophic cardiomyopathy (oHCM) can come with challenges, but there are treatment options available to help manage symptoms and improve quality of life. From medications to specialized procedures, treatment plans are personalized based on each person's needs, symptoms, and goals. Staying connected with your healthcare team and understanding your options can help you feel more confident in your care journey.
Click the link below to share your story today.
https://ow.ly/Jo3a50ZZMLQ 
#oHCM #HypertrophicCardiomyopathy #HeartHealth #PatientEducation #PatientWorthy #HeartDiseaseAwareness #PatientVoice #ShareYourStory 💙
Feeling sleepy isn't always the same as being tire Feeling sleepy isn't always the same as being tired. For some people, excessive drowsiness can interfere with concentration, work, social activities, and the ability to stay alert throughout the day. Somnolence may be associated with certain medical conditions, medications, or sleep disorders. Raising awareness of symptoms like somnolence helps highlight how changes in alertness can affect daily functioning and overall quality of life. 
#RareWordOfTheWeek #RareDisease #RareDiseaseAwareness #PatientWorthy
Today we would like to spotlight Travis, a male br Today we would like to spotlight Travis, a male breast cancer survivor, advocate, award winning hairstylist and owner of Resilience Beauty Box. If you'd like to share your cancer journey and inspire others, click here: https://bit.ly/4bG3Yq4#shareyourstory #malebreastcancer #cancer #patientworthy #whatnext
Raising awareness starts with understanding. 💜 PTE Raising awareness starts with understanding. 💜 PTEN Hamartoma Tumor Syndrome (PHTS) is a rare genetic condition associated with the development of hamartomas and an increased risk of certain cancers. Greater awareness can help encourage early diagnosis, appropriate screening, and ongoing support for individuals and families affected by PHTS.
Today, we stand together to amplify awareness, support the PHTS community, and remind everyone that every rare condition deserves recognition, research, and understanding. 💜
More awareness. More support. Better outcomes.
#PTENHamartomaTumorSyndrome #PHTSAwareness #PatientWorthy
Did you know that an abnormally thickened heart mu Did you know that an abnormally thickened heart muscle can make it harder for blood to flow out of the heart?
Obstructive hypertrophic cardiomyopathy is a heart condition that requires proper evaluation, testing, and individualized care. From echocardiograms and cardiac MRI to medications and specialized procedures, there are different ways healthcare professionals can assess and manage the condition.
Recognizing symptoms, understanding your diagnosis, and staying connected with your healthcare team are important steps toward better heart health.
Awareness starts with education. Share this post to help spread the word! ❤️
If you'd like to share your story with us today, click the link in our bio to share!
#ObstructiveHCM #HypertrophicCardiomyopathy
Before an appointment, I ________ to help calm my Before an appointment, I ________ to help calm my nerves.
✨ Your answer can be anything, share what works for you in the comments!
#PatientWorthy #PatientVoice #HealthcareJourney #ShareYourStory #PatientSupport
That 8 hour road trip? For someone with a rare dis That 8 hour road trip? For someone with a rare disease or chronic illness, it's not just a drive... it's strategy, pain management, bathroom planning, and hoping your body cooperates. Same destination. Completely different experience. When we understand that the same road trip means something different for everyone, we create real inclusion. #ChronicIllnessAwareness #RareDiseaseAwareness #AccessibilityMatters
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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.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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