Post Views: 313 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 …
Post Views: 246 Tai chi for Rare Conditions I have been a family physician for over 40 years, and I have treated many people with rare diseases. Also, in my personal life some of my close friends have rare conditions. No matter what the condition or disease is, it is a challenge for anyone. However, …
Post Views: 398 This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health. There were times when my life revolved around mobile phones, or to be specific my smartphone and I’m sure many of us can relate to it. I made use …
Post Views: 245 Q-1) Could you briefly describe your story? A-1) Hey I am Ramuna. I was diagnosed with ‘’Polyarthritis” when I was half a year old. My right ankle doesn’t bend over, and my leg is small and thin. In my country Lithuania I was second with polyarthritis. Before I was diagnosed with polyarthritis …
Post Views: 312 This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health. He says I’ll be fine At times life bends us way too much between two breaths, Health is an honour and not everyone is respected, Wonder why our relationship …
Post Views: 242 Rachit: – Rare & Chronic ailments are not the kind of diseases that can be managed alone. As I reflect on the years since my diagnosis, I wish to acknowledge my family’s strength and spirit that proved vital to my recovery. A caregiver’s role is never easy. Q-1) Could you briefly describe …
Post Views: 275 There were moments in life when I felt like I possessed superpowers that could change circumstances! Continuing from my last blog, why did I start living like someone else? – wherein I spoke about the ways my life changed in 2016 after I was diagnosed with a rare disease, Isaacs’ Syndrome (also …
A Never Changing You, Will Eventually Destroy You! Read More »
Post Views: 243 Q-1) Could you briefly describe your story? A-1) I started noticing vibrations, under my skin, similar to a cell phone vibration, in 2011. As time went on, I started experiencing more intense cramping in my extremities. When I went to the doctor, he suggested that it was from being diabetic and my …
Ways Marie is Dealing With Cramp Fasciculation Syndrome Read More »
Post Views: 271 Q-1) Could you briefly describe your story? A-1) I was diagnosed with POEMS Syndrome in November 2021. The symptoms were evident and showed up for almost a year. It took almost 6 months for the diagnosis. Many tests followed and consultations to finally get the diagnosis. POEMS syndrome is a rare blood …
Post Views: 350 This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health. For God’s sake, could we live in a world that is free of unnecessary societal rules, or is it hardwired into our DNA? I am talking about those rules …
Convalescence: Though Forgotten, Yet a Stronger Way to Recover Read More »
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