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Thalassemia: Living Through Constant Low Hemoglobin and Repeated Transfusions

Post Views: 813 My name is Megha, though I never could relate to it. It could have been anything. 🙂 I was diagnosed with Thalassemia a few months over two years, I don’t recall what I experienced at that time. The oldest memories of resistance, are of clutching the bedroom door handle tight, wearing a pink printed […]

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8 Ways How Patient Support Groups Were A Boon to My Health Crisis

Post Views: 810 This blog is another opportunity to feel grateful and thank you, dear Universe: You continue to bless me with recovery and overall health.   Introduction: From Diagnosis to a New Path In 2016, my world changed dramatically when I was diagnosed with Isaacs’ Syndrome. It is a rare, puzzling, and often unseen neurological

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Why I Couldn’t Rely Only on Doctors: and Started Researching Myself

Post Views: 874 This blog is another opportunity to feel grateful. Thank you, dear Universe, you continue to bless me with recovery and health. My research about my rare and chronic diseases began when I was left with a list of unanswered questions!! The purpose of gathering information and knowledge goes beyond textbooks. The idea

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5 Essential Steps for Families Supporting Loved Ones with Rare Diseases

Post Views: 955 Living with a rare disease like Isaacs’ Syndrome is not just a medical challenge. Trust me, it’s a deeply personal journey that reshapes your identity, your relationships, and your outlook on life. As someone who has walked this path, I feel compelled to share my story. It’s not just to raise awareness

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