My husband, Jared, has fond memories of his school days when he was younger. He went to an all-boys combined elementary school and high school, where roughhousing and horsing around with friends were common. He and his classmates sometimes were crude and rowdy, he says, but they were all very…
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It started the fall of my daughter’s sixth-grade year in school. While I had listened to DJ Elliot Segal of the radio talk show “Elliot in the Morning” for nearly 20 years by then, I’d done so mostly solo. My husband found no value in the show, and I…
My youngest son, wife, and I just returned from an appointment with our hematologist concerning plans for treatment. In the twinkling of an eye, our worlds changed. We will move to a new procedure requiring an injection given every two weeks. How could this be? Wasn’t it last…
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s highest-ranking health official said. “We have to think about how our financing system can protect those with serious and rare illnesses.
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Finding Routine in Chaos
Having a family member admitted to the hospital throws the entire family’s routine into absolute chaos. We lose our control of time, as well as our privacy. While it is great to see a friend or to hear good news from the medical staff, we are unable to dictate…
I recently stumbled across a passage on social media referring to relationships: “If you want a garden? Take care of it. You want love? Love them.” Something about those simple words struck a chord with me. Instinctively, I forwarded it to my husband, Jared. “This is exactly why I’ve been…
The smell of rubber. The clanging of metal plates against one another. The sight of sweaty bodies heaving, struggling. Towels slung over shoulders. Muscles popping out of the chiseled physiques of a couple who walk through the place like a king and queen (fittingly, as they are its owners). Jared…
More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…
In Chinese philosophy, the concepts of yin and yang represent two opposing forces that come together in synergy to complement each other and create a perfect balance. Their symbols are interconnected black and white halves of a circle, each with a dot of the opposite half’s color. It perfectly…
My husband, Jared, and I run an online jewelry store. Over the years, the fact that our store is run by persons with disabilities (PWDs) has become one of its main selling points. We’ve had fellow PWDs and advocacy supporters speak to us and purchase items. They mentioned that…