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16 hours ago

Sometimes the things that take the most effort are the things nobody else sees.
Making the appointment. Asking the question. Speaking up when something doesn't feel right. Resting before you hit a wall. Keeping up with medications, paperwork, and everything in between.
They may seem small from the outside, but they can take a lot of energy.
If you've done any of these lately, give yourself credit. Those small wins matter more than you think.
#chronicillness #invisibleillness #raredisease #YouAreNotAlone #PatientWorthy
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Sometimes the things that take the most effort are the things nobody else sees.
Making the appointment. Asking the question. Speaking up when something doesnt feel right. Resting before you hit a wall. Keeping up with medications, paperwork, and everything in between.
They may seem small from the outside, but they can take a lot of energy.
If youve done any of these lately, give yourself credit. Those small wins matter more than you think.
#ChronicIllness #InvisibleIllness #RareDisease #YouAreNotAlone #PatientWorthy
16 hours ago

THE WOBBLES
It’s one of the first things many people notice about children with Ataxia-Telangiectasia
They sway when they stand. They stumble when they walk. They wiggle. They shift. They move constantly.
Charlotte’s “wobbles” are part of her daily life and some days they’re more noticeable than others. What many people don’t realize is that for children with A-T, staying still can be incredibly difficult. It’s exhausting for them. Their brains are constantly working to coordinate movements that most of us never have to think about. Even something as simple as standing in one place, sitting upright, or waiting for your turn during swim lessons takes incredible effort.
# Ataxia-Telangiectasia #charlottesstory #charlottescure #ataxiatelangiectasia #atchildrensproject #PatientWorthy #StoryShare
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21 hours ago

Answers often begin with asking the right questions. Understanding how myelofibrosis with anemia is diagnosed can help patients and caregivers feel more informed, prepared, and empowered throughout the diagnostic journey. Awareness starts with knowledge. 💙

We want to hear from you! Click the link below to share -
bit.ly/3VuxFDV

#Myelofibrosis #AnemiaAwareness #PatientWorthy
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Answers often begin with asking the right questions. Understanding how myelofibrosis with anemia is diagnosed can help patients and caregivers feel more informed, prepared, and empowered throughout the diagnostic journey. Awareness starts with knowledge. 💙

We want to hear from you! Click the link below to share - 
https://bit.ly/3VuxFDV

#Myelofibrosis #AnemiaAwareness #PatientWorthy
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