Author Archives: Terry Jo Bichell

Give Up Hope? Wrong Prescription, Doc

Hope is a treatment that works for any disease. Why don’t doctors understand that? When my son, Lou, was diagnosed with Angelman syndrome 20 years ago (wow, that was quick), I was told there was no hope for a cure. I was informed that Lou would have uncontrollable seizures,…

Lou Needs a Unique Identifying Number, Too

We already have social security numbers, dates of birth, addresses, license plates, heights, weights, and ICD-10 codes. Isn’t that enough? No. It just plain isn’t enough for people with rare diseases. We need one more number. A unique identifying number that can cut through all the mustard, all the red…

Lou’s Leg Has Been Broken for Over a Year

My son Lou’s leg has been broken for 18 months. It must hurt like crazy. If I had a broken leg even for a day, I would surely be crabby, despondent, and mean. But not Lou. Because he has Angelman syndrome, my 21-year-old son cannot speak, but he is often…

Privacy Makes Me Sick!

Who are we kidding? What are we hiding? OK, sure, it is bad when somebody steals enough personal information to open a fake credit card or empty a bank account. But really, most of us are pretty public about our names and addresses and what we care about on social…

My Son Is Not Your Guinea Pig

Everybody wants my son’s cerebrospinal fluid. My 20-year-old son, Lou, has Angelman syndrome from a deletion of genes on his maternal 15th chromosome. The lack of those genes makes it hard for Lou’s brain to understand abstract concepts, such as waiting in line to buy ice cream that he…

Rare Resilience: Is There a Gene for That?

Welcome to Terry Jo Bichell’s “A Rare Mind,” a new Angelman Syndrome News column. About 75 people, mostly women, were in the room at the Washington Marriott Georgetown, listening attentively to lectures presented by Global Genes about a really technical subject. The attendees were teachers, waitresses, housewives, and marketing executives…