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Thriving Over Surviving

I am a Filipino, living and working in Vietnam. I was diagnosed with Leiomyosarcoma last February 2016 on my upper right thigh here in Vietnam. I… Continue reading Thriving Over Surviving

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Surviving day to day

Surviving is one thing Zach does best. Anything from seizures to drinking water can kill him but he has a great spirit and a wonderful smile and… Continue reading Surviving day to day

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The frustrating road to diagnosis

I returned from overseas deployment in 1991 with fevers, chronic sinusitis, lymphadenitis and fatigue. Biopsy of lymph nodes demonstrated non-specific granulomatas tissue. Labs were all normal.… Continue reading The frustrating road to diagnosis

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Living with Chronic Intestinal Failure; the courage to move on.

In January 2018 I was rushed into theatre at my local hospital for what became lifesaving surgery. I had been struggling with abdominal and back… Continue reading Living with Chronic Intestinal Failure; the courage to move on.

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No, I do not have asthma!

I’ve just had my 28th operation, which for most people is quite a few, but among my peers with idiopathic subglottic stenosis, it is fairly… Continue reading No, I do not have asthma!

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Hannah’s journey with Cornelia de Lange Syndrome

Hello!  Meet Hannah, my daughter.  She is, and will always be, my inspiration. Hannah is 9 years old. She loves to eat Broccoli (hence the… Continue reading Hannah’s journey with Cornelia de Lange Syndrome

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Pseudopseudohypothyroidism (progressive osseus hetroplaisia

I was diagnosed with pseudopseudohypothyroidism, or the  more common name is progressive osseus hetroplaisia.   I have had this disease all my life but was diagnosed officially 5… Continue reading Pseudopseudohypothyroidism (progressive osseus hetroplaisia

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How Zellweger Syndrome Changed Our Lives For The Better

Our story began just 3 days before Rare Disease Day. On February 25th, 2018 our daughter Lily Reagan was born. Immediately we noticed something was… Continue reading How Zellweger Syndrome Changed Our Lives For The Better

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Outliving Prognosis

David was born full-term. He was very small and his lungs were not developed enough to breathe on his own. He was placed on a Ventilator in the… Continue reading Outliving Prognosis

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