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Many young people enter adulthood with dreams and goals in mind. The burning desire to attain these goals drives them to carry on through hardships and challenges. But for people with chronic illness, achieving goals can be harder, as they may face more obstacles related to their condition. It may…

Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…

I have a number of friends working as financial advisors. From time to time, they offer me life insurance policies, stock market deals, and other similar investments. As a young mom and businesswoman, I am right within their target market. I take interest in all sorts of financial tools…

My husband, Jared, recently celebrated his birthday. Hooray for 29 years of fighting and surviving! He opted for a low-key celebration at home with me, our daughter, Cittie, and her nanny. Because it was a weekday and I had to work, we didn’t have much time to do anything particularly…

My recent columns have focused on my experience at the National Bleeding Disorders Foundation’s (NBDF) annual Bleeding Disorders Conference, held Aug. 21-23 in Aurora, Colorado. I wrote about fun times with colleagues and new friends, and offered my gratitude to salespeople who truly care. I shared that my…

I love the months of October and November. Leaves change colors, and the air is crisp and cool. It also is the season when we take a moment to count our blessings. I am referring to the things that bring us joy. Sometimes in our chaos with chronic illness, we…

Usually, as the year comes to a close, we turn our attention to resolutions. It’s often a reflective time, when the prior year’s events and actions come under scrutiny. The most common resolution usually has something to do with health and fitness. But 2020 is far and away a different…

When my husband, Jared, and I were dating, many of our friends thought we had the perfect relationship. We were snuggly best buddies, intimate and passionate lovers, and mentors to each other. It was a bond I could only describe as spiritual and otherworldly. I had never met anyone who…

I recently took a photo of my husband, Jared, looking after our daughter, Cittie. They were both snuggled up on a foam mattress laid out in front of the television. It was a sweet photo, but their perfect smiles and adorable cuddles obscured a dark reality: At the time, Jared…