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11 Dec

Social media & the diagnostic odyssey

INTERVIEW A SOCIAL MEDIA SEARCH In this video, we hear from Ema McCorkell who lives with the rare condition FND or Functional Neurological Disorder.. We learn about her diagnostic odyssey of five years and how her ability to navigate her own way through information sources and social media helped her to achieve a diagnosis.
Sheila Khawaja expert patient WAPO.org
08 Jan

Journey from patient to advocate

INTERVIEW A journey from patient to advocate In this short video clip, Sheila Khawaja, a patient advocate who lives with acromegaly describes her convoluted and confusing journey to diagnosis, the "diagnostic odyssey" to a place of understanding and advocacy for others who are going through similar. It is a story of resilience in the face...
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Diagnosing acromegaly
08 Jan

The diagnosis of acromegaly

INTERVIEW  Receiving the diagnosis of acromegaly. "It was like winning the lottery". Patient Advocate Sheila Khawaja describes her response fifteen years ago to receiving a diagnosis of acromegaly. After many years of confusion and uncertainty she describes her diagnosis as "like winning the lottery"!
08 Jan

Introducing Medics4RareDiseases

INTERVIEW Medics4RareDisease We are delighted to highlight the work of Dr Lucy McKay (CEO of Medics 4 Rare Diseases) as she briefly describes why she believes all Physicians should "dare to think rare" and should be educated to consider a rare condition as a possible condition within their daily practice.