Columns

Reflecting on my daughter’s first experience with IVIG therapy

Note: This column describes the author’s own experiences with IVIG therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Our family learned the gravity of words when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS)…

Having the talk about what to do in case of an emergency

For the past two weeks, the elevator at my daughter’s school has been out of order. This complicates things greatly for Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) when she was 15 years old. Looking back, I am so grateful we made the decision to home-school our…

Seeing major improvements thanks to long-term physical therapy

“Continuous effort — not strength or intelligence — is the key to unlocking and using our potential.” — Liane Cordes Physical therapy is often the first step toward renewed strength for those with Lambert-Eaton myasthenic syndrome (LEMS). Even before our daughter Grace was diagnosed with LEMS at…

Why it makes a difference to meet others with LEMS in person

Our daughter Grace is more than three years out from her diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). Until now, we’ve never met anyone in person who has LEMS. We’ve had wonderful friendships develop through Facebook groups, Bionews forums, Zoom town halls, and phone calls. But it’s not…