According to a story from Gloucestershire Live, Emma Robinson, who is only 46 years old, was just told by her doctors that she has terminal cancer. She had vulvar cancer,…
Let's take a moment during these dog days of summer to recognize the SMA community during SMA awareness month! Spinal muscular atrophy (SMA) is a rare genetic disorder that causes…
According to a story from Kaiser Health News, many patients that are dealing with chronic pain feel stuck in the debate over opioids in the US. As the ongoing crisis…
According to a story from World Lifestyle, Emmy and Jake were high school sweethearts, destined for love. Indeed, even after years apart, the two found themselves together again after graduating…
In an article by the Fibrous Dysplasia Foundation, the brief and wondrous life of Mauricio Saravia is remembered and celebrated on the advent of his mother’s memoir publication. Mauricio,…
Besides the obvious need for ties within the medical, pharmaceutical, and social industries, I have always wondered internally why it is so necessary that parents, adults, children, and loved ones…
Dr. David Scadden is a hematologist, oncologist, and Harvard medical school professor. He is also the author of a memoir for a book recalling his early medical schooling and career.…
According to a story from MPR News, Rae Baylark, who is the founder and current president of the Sickle Cell Foundation of Minnesota, felt like she had nowhere to seek…
According to a story from Buffalo News, Brett Perla was graduating high school when he first starting to experience symptoms of a rare condition of the cornea called keratoconus. This…
July 13th was Gastrointestinal Stromal Tumors Awareness Day! And that "13" has extra relevance. 5,000 Americans are diagnosed with Gastrointestinal Stromal Tumors (GIST) each year. That’s 13 people diagnosed each…
According to a story from philly.com, four year old Ethan Lieber of the Roxborough neighborhood in Philadelphia is one of just 500 people in the US with Hunter syndrome. This…
To read parts 1 and 2 of Maxine's dysautonomia journey, click here and here. It was a complete scope of my upper gastro track and everything went well with the…
According to a story from cbc.ca, Cole Pringle is a 31-year-old man from Regina, Saskatchewan with spinal muscular atrophy, a debilitating illness that severely affects his mobility. He was diagnosed…
According to a story from The Sun, Alex was just two months old when he first experienced symptoms of xeroderma pigmentosum. His parents took him out to the park and…
Check out part 1 of Maxine's dysautonomia story here. The ambulance took me to the hospital, where they not only started an IV but also began giving me blood. I…
A series called ‘Gonads’ by RadioLab is looking into human reproduction. Their second episode, which is the source used for this article, can be found here. It explores the story of Greg…
Meet Ruby, a beautiful 3 year old who was diagnosed with hypomyelination with atrophy of basal ganglia and cerebellum, or H-ABC, shortly after her birth. H-ABC is a type of leukodystrophy…
According to a story from Pulmonary Hypertension News, It has been three years since Miloš Lazić had is first encounter with pulmonary arterial hypertension. As an active member of Serbia's…
This is the first installment of a three part dysautonomia story. “Every woman has a moment in life that changes everything. What’s that moment for you?” I read this question…
According to a story from the Sydney Morning Herald, Hayley Wyatt appeared to be calling for her mother in her final moments, but there was nothing anyone in her family…
According to a story from MIT Technology Review, it was 2011 when Sonia Vallabh received the results of a genetic test that showed that she had the genetic mutation responsible…
Ailani Banuelos is a 12-year-old with a dream. She not only wants to see the ocean but paddle in it. Living in Chicago made the dream fairly difficult. There simply…
Ashley Wibberly’s son Levi was born in September of 2013 and lived for just 20 months with Krabbe disease. Ashley couldn’t have seen it coming. Now, however, a new test…
According to a story from the Sydney Morning Herald, Maxwell Hayes thought that is cancer was gone after an eight year period of remission. Then, his mantle cell lymphoma returned.…
Denise Albert is a busy woman. She founded The MOMs media company. She enjoys music, concerts, and time with her boyfriend. She is also a happily divorced mom of two…
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