Living with the Puke Monster– Dealing with Cyclical Vomiting Syndrome

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Cyclic Vomiting Syndrome… a rare disease characterized by recurrent episodes of nausea and vomiting with no known cause or cure. I started getting sick around age four with these mysterious episodes of severe nausea and vomiting that would last for days to two weeks at a time. […]

Hanging onto Hope One day at a Time with Eosinophilic Esophagitis

A beautiful girl, Samantha has two rare diseases that few would be able to guess just by looking at her.

For years, Samantha has lived with Eosinophilic Esophagitis (EoE), an incurable disease that causes her body to view most food as a parasite and attack. When Samantha’s condition was first diagnosed in 2007, her doctors and her family worked hard to try anything that could […]

“It’s Not Just a Disease— It’s Genetics” Siblings Share Rare Disease, Diagnosed through Genome Sequencing

From left to right: Rick and Cristy Spooner with daughters Cali, 14, Ryann, 3, and Raelyn, 7 (Courtesy Mindy Land Photography / February 28, 2013).

Cristy and Rick Spooner of Rancho Santa Margarita finally learned two and a half weeks ago that two of their three daughters have a rare genetic disorder, a diagnosis which they waited more than a decade for. All it took was reconnecting with a UC […]

Lynn, MA Gathering Lends Hope to Those With Rare Illness

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Lynn resident Elaine Chittick was diagnosed last October with a disease so rare that many medical professionals don’t know what it is. Her years-long diagnosis of mitochondrial disease, which causes a wide variety of problems in patients whose mitochondria in cells don’t produce enough energy […]

With Twins who have Mitochondrial Disease, Gina Learns that Life is About Cherishing the Little Moments

Julia and Maya, twin sisters, were diagnosed with mitochondrial encephalomyopathy at four years old.

I wrote the following piece yesterday, thinking of all my friends who have lost their children to illness. In the wake of today’s tragedies in Connecticut and China schools, it seems extra relevant to appreciate what you have although I know it can be so […]

Lillian Looks Like a “Normal” Kid Yet Suffers From At Least Six “Abnormal” Diseases

Lillian is living with many diseases including Wolfram syndrome.

Lillian, almost age 5, is living with Juvenile Arthritis, mitochondrial disease, Famillial Mediterranean Fever, cyclic vomiting syndrome, partial complex seizures, and recently diagnosed Wolfram Syndrome. There is nothing normal or common about her diseases. Familial Mediterranean fever (FMF) is a hereditary inflammatory disorder.  When you […]

Mitochondrial Disease: Jeans for Genes

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Raising Awareness for Rare Disease Day and Mitochondrial Disease Many of us struggle with not knowing how we can make an impact on Rare Disease.  Whether we are faced with the day-to-day difficulties of a rare disease itself, or we are passerby’s watching others’ demanding fight […]