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Ectodermal Dysplasia Awareness Month is a chance to learn about the genetic conditions that affect hair, teeth, skin, nails, and sweat glands. People living with ectodermal dysplasia often navigate challenges like temperature regulation and dental or skin differences. By spreading awareness, we help build understanding, support, and early recognition for those affected. 💛 #ectodermaldysplasiaawareness #rarediseaseawareness ... See MoreSee Less

Ectodermal Dysplasia Awareness Month is a chance to learn about the genetic conditions that affect hair, teeth, skin, nails, and sweat glands. People living with ectodermal dysplasia often navigate challenges like temperature regulation and dental or skin differences. By spreading awareness, we help build understanding, support, and early recognition for those affected. 💛 #EctodermalDysplasiaAwareness #RareDiseaseAwareness

During Rare Disease Month, Patient Worthy is honored to share Krystle's journey!
Krystle is a 33‑year‑old mother, storyteller and advocate living with myositis. This rare autoimmune disease causes her immune system to attack her muscles, which leads to inflammation, weakness and chronic fatigue. At this stage of life, she navigates motherhood in ways she never expected. Her two daughters support her emotionally and sometimes step in as caregivers when her body needs rest. Tasks that once felt automatic now take planning, patience and creativity. Mobility looks different. Her energy is limited, so she’s learned to protect it and focus on what truly matters. Through motherhood, work and community building, she shows that strength is more than physical. It’s resilience, intention and heart.
For Krystle, Rare Disease Month is about visibility and truth. Rare does not mean insignificant, and muscle weakness does not mean weak. By sharing her story, she hopes to raise awareness, challenge assumptions about invisible illness and remind others living with rare conditions that their experiences matter. Advocacy, for her, isn’t just about being heard. It’s about making sure no one feels overlooked or alone.
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #MyositisAwareness #AutoimmuneWarrior
... See MoreSee Less

During Rare Disease Month, Patient Worthy is honored to share Krystles journey!
Krystle is a 33‑year‑old mother, storyteller and advocate living with myositis. This rare autoimmune disease causes her immune system to attack her muscles, which leads to inflammation, weakness and chronic fatigue. At this stage of life, she navigates motherhood in ways she never expected. Her two daughters support her emotionally and sometimes step in as caregivers when her body needs rest. Tasks that once felt automatic now take planning, patience and creativity. Mobility looks different. Her energy is limited, so she’s learned to protect it and focus on what truly matters. Through motherhood, work and community building, she shows that strength is more than physical. It’s resilience, intention and heart.
For Krystle, Rare Disease Month is about visibility and truth. Rare does not mean insignificant, and muscle weakness does not mean weak. By sharing her story, she hopes to raise awareness, challenge assumptions about invisible illness and remind others living with rare conditions that their experiences matter. Advocacy, for her, isn’t just about being heard. It’s about making sure no one feels overlooked or alone.
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #MyositisAwareness #AutoimmuneWarrior

AstraZeneca Pursues FDA Approval for Injectable Lupus Treatment Following European Authorization bit.ly/4rrI81G Read now at PatientWorthy.com
#PatientWorthy #lupus #europeanauthorization #clinicaltrial
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AstraZeneca Pursues FDA Approval for Injectable Lupus Treatment Following European Authorization https://bit.ly/4rrI81G Read now at PatientWorthy.com
#PatientWorthy #Lupus #EuropeanAuthorization #ClinicalTrial
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