Society & Culture:Personal Journals
In this poignant episode of The Elite FEW podcast, we are honored to have Sheila Hoehn, the brave mother of Lilly, who suffers from CRMO (Chronic Recurrent Multifocal Osteomyelitis), a rare auto-inflammatory bone disease. Sheila candidly discusses her family's struggles and roadblocks in early diagnosis and patient advocacy in a system that often overlooks rare diseases. Lilly's heartbreaking story, from misdiagnosis to eventual understanding, serves as a call to action for medical reform and public awareness.
Tune in to find out how you can contribute to bettering the lives of patients like Lilly. This episode powerfully resonates with our core mission to bring light to the triumphs and trials of unique individuals and offer a platform for belonging and community.
Lily's Book, as seen in the episode https://www.amazon.com/Lilys-Lollipop-Land-Sheila-Rochefort-Hoehn/dp/B089773KT2 Sheilas
Email: childrensrarecare@gmail.com NORD: https://rarediseases.org/
GoFundMe Link: Support Lilly's Fight against CRMO https://www.gofundme.com/f/fight-for-laelle
#CRMOAwareness #SheilaHoehn #PatientAdvocacy #RareDiseases #EarlyDiagnosis #MedicalReform #TheEliteFEWPodcast #ChronicIllness #MedicalMisdiagnosis #HopeForCRMO #BrokenSystem #CRMOJourney #ChronicPain #HealthcareFailures #ParentAdvocacy #SpecialNeedsMom #RaiseAwareness #HealthcareChallenges #VoiceForTheVoiceless #LillysFight
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