Post Views: 716 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 …
Cramp Fasciculation Syndrome: What Marie Does When the Twitching Won’t Stop Read More »
Post Views: 610 Archith’s Note: Today, we welcome Diana, a resilient woman from the United States who lives with Parkinson’s Disease. It is a condition that challenges the body, but not the spirit. In the depths of physical vulnerability, Diana discovered something unexpected that sparked joy, agency, and even healing: shopping. Yes, shopping… Often seen …
Parkinson’s Disease: From Heartache to Handbags: How Shopping Became My Way of Coping Read More »
Post Views: 752 Q-1) Could you briefly describe your story? A-1) I started with severe foot pain in 1998 at age 25. I underwent routine testing. It spread to my hand. I got a diagnosis of small fiber neuropathy. Testing also revealed an adrenal condition for which I received treatment over two years Following cessation …
Fiber Neuropathy: Tracy on Living with Nerve Pain That Doesn’t Switch Off Read More »
Post Views: 744 Hi, I’m Jennifer, but most people call me Jenni. I’m not a doctor, not a scientist, and certainly not someone who ever imagined she’d be writing about a rare lung disease. But life has a way of surprising us, sometimes in the most painful ways. What began as a simple cough during …
Hypersensitivity Pneumonitis: Jennifer’s Diagnosis Changed More Than Just Her Lungs Read More »
Post Views: 486 Archith’s Note: We all have our own version of the COVID story. For me, as a patient with Isaacs’ Syndrome, the pandemic was a test of endurance and a surprising teacher. This blog is about the silver linings that a rare disease patient, Ebony, found in the midst of uncertainty. She innovatively …
Acromegaly: When COVID Disrupted a Body Already Dealing with Hormonal Imbalance Read More »
Post Views: 626 A Heart Attack at 28 Most people think heart disease is something that happens in old age. But for Aria, a 28-year-old teacher, her first heart attack came before she even turned 30. She was young, active, and had no obvious risk factors. What she didn’t know was that she was living …
Familial Hypercholesterolemia: Living with High Cholesterol That Shows No Warning Signs Read More »
Post Views: 809 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 …
Thalassemia: Living Through Constant Low Hemoglobin and Repeated Transfusions Read More »
Post Views: 627 Archith’s Note: Eric lives with Pernicious Anaemia, a rare autoimmune condition that affects the body’s ability to absorb vitamin B12. While managing a chronic illness comes with its challenges, Eric has discovered an unexpected and powerful source of healing with his pets. Through his blog, Eric shares how the unconditional love, companionship, …
Mental Health: How Pets Helped When My Mind Wouldn’t Slow Down Read More »
Post Views: 1,853 Archith’s Note: From Bangalore, India, Nakul lives with Gastrointestinal Stromal Tumors (GISTs). It is a rare type of cancer that affects the digestive tract. While his health journey has been filled with challenges, Nakul has chosen to focus on something powerful and universal: the healing potential of everyday habits. In his blog, …
Daily Health Management: The Kitchen Changes That Helped Me Stay Consistent Read More »
Post Views: 769 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 …
POEMS Syndrome: When Nerve Issues and Symptoms Didn’t Seem to Connect at First Read More »
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