Guest Post by Varsha Vijayakumar
Varsha delves into the impact of a diagnostic pathway on patients and their caretakers, and questions the current focus on mental health and assistance offered…
Welcome to my corner of resilience and innovation.
Embark with me on a journey through the swamp of rare diseases and healthcare challenges, where acceptance meets resilience and innovation thrives. From navigating medical complexities to embracing self-acceptance, come along as I share my experiences, insights, and discoveries. Together, we're forging new paths and shaping a future where every voice is heard. ______________________________________________________
Rare but still deserving of care
Guest Post by Jasmine Rutere
Jasmine’s essay unpacks the the barriers and benefits which exist regarding patient participation in rare disease research.
Beyond the cookie cutter
Guest Post by Rachel Lee
Rachel explores the challenges that J has experienced during her rare disease journey through a lens that considers both her intersectional identities as well as those of other rare disease patients.
Visit from Outside
Let me introduce you to the people that would visit me during my depression. Not all encounters were good but all were moments to learn from.
(This post is an addition to the post ‘Depression: Hello Darkness my Old Friend…’)
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Saboteur
I am that voice saying: ‘You’re not good enough little girl. You’re not smart enough or tough enough or strong enough to make it in this world’.
(This post is an addition to the post ‘Depression: Hello Darkness my Old Friend…’)
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Depression: Hello Darkness my Old Friend…
Two days have past since my 3rd myxoma was found. I share with you how I try to make sense of and cope with my depression.
(This post is a continuation of the post ‘Heart Screening for Cardiac Myxomas’)
Rare Cancer Day September 30th
This year I wanted to add my voice to the one of #RareCancerDay. I’ve copied NORD’s questions and my answers here. Want to participate by
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Heart Screening for Cardiac Myxomas
Regular heart screening is part of life for people with Carney Complex. In this blog post I attempt to share with you the roller-coaster of emotions involved.
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What if I told you that you know someone with Carney Complex?
You‘d probably look at the numbers and say… that‘s impossible. Too rare!
What if I told you you are wrong?
You‘d more than likely shake your head in disbelief. Asking yourself hadn‘t we just done the math? No chance!
‘Student Voice Prize’ Wettbewerb
Gast-Beitrag (EN/DE)
Ich hatte das Vergnügen, mit „J“ zu sprechen, einer Frau mittleren Alters, bei der eine unglaublich seltene Krankheit namens Carney Complex (CC) diagnostiziert wurde.
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