MSI Press Blog

  Emergencies don’t always come with flashing lights. Sometimes, they come with silence. My son—45, living with CHARGE Syndrome—was eating in a booth at Fosters Freeze when he began choking. He stopped talking and sat perfectly still, rigid. A super example of hyperactivity, he does not know to sit still; this was not normal. Then, his body turned rubbery. His skin changed color. His eyes locked and rolled back. He wasn’t breathing. We were the only customers. I asked twice— please call 911 . No one moved. And so, I stopped speaking. I stopped asking. I did what decades of caring for him trained me to do. I tried to save him. He was wedged into the booth. I couldn’t lift him out—I couldn’t fully lift him at all. I managed to pull him partway out, enough to get his head hanging down over the bench. I hit his back, again and again, and waited for breath to return. It took minutes. I’m not sure how many—time doesn’t tick normally when your child is blue. Eventually, his lungs be...

  Aging brings many questions about medical care, and colonoscopies are no exception. When should you start them? When should you stop? The answers aren’t as straightforward as you might think, especially when family history, anesthesia risks, and individual health concerns come into play. When to Start and Why? For most people, the recommended age to begin screening for colorectal cancer is 45 (lowered from 50 in recent years due to increasing cases in younger adults). However, if you have a strong family history—like my siblings and I, who all have had pre-cancerous polyps found at each colonoscopy—you may need to start even earlier. Doctors recommend earlier and more frequent screenings if you have: A family history of colorectal cancer or pre-cancerous polyps Certain genetic conditions like Lynch Syndrome A history of inflammatory bowel disease (Crohn’s or ulcerative colitis) When to Stop and Why? Many doctors advise stopping colonoscopies at 75 —but is that t...

  Today, February 28, 2025,* marks Rare Disease Day, an international observance dedicated to raising awareness about rare diseases and their impact on patients' lives. Among these conditions is CHARGE Syndrome, a complex genetic disorder that affects approximately 1 in 10,000 births worldwide. The acronym CHARGE stands for Coloboma, Heart defects, Atresia choanae, Restricted growth and development, Genital abnormalities, and Ear abnormalities - reflecting the multiple systems affected by this condition. What makes this Rare Disease Day particularly noteworthy is the ongoing contribution of Shenan Leaver, believed to be the oldest living person with CHARGE Syndrome in the world. Despite facing numerous medical challenges throughout his life, Leaver has defied expectations by not only surviving but thriving as an author. His resilience exemplifies the potential for individuals with rare conditions to lead fulfilling lives when provided with proper support and opportunities. Leaver...

  My eyes are pretty good -- well, actually, very, very good. At 75, I still do not need glasses (per my last eye exam three days ago). This only once in a while seems unusual to me when one friend or another complains about an eye problem or glasses or... eye cancer (yep, there it is, the big C associated with eyes). When my CHARGE Syndrome son, who lives at home with me, saw his own eye doctor the next day, I learned that it really is very rare to have normal near vision at my age. The doctor prepped my son for what she thought would be unpleasant news (that he would have to start wearing glasses now at age 45). Age 40 is kind of a magical line, she explained in language she hoped he would understand. Once you cross that magic line, you can pretty much expect to need glasses. "Uh, not always," I interrupted her. "I crossed that line 35 years ago, and, well, nada changed." She ignored me -- what could she really say -- and proceeded to check my son's eyes. Res...