The mother of a man with SMA seeks to inspire others to modify favorite family recipes to accommodate a loved one's eating difficulties
posted on January 1, 2011 - 1:31pm
Have you ever considered whether you eat to live or live to eat?
Food often holds a place of honor in our lives. Have you noticed how many events are accompanied by an element of food and drink? We have cake to celebrate birthdays and family reunion potluck picnics, as well as champagne toasts at a wedding.
Study finds that children and adults with SMA who can't walk but otherwise have good motor function are at risk for becoming overweight
posted on July 22, 2010 - 10:20am
Children and adults with types 2 and 3 spinal muscular atrophy (SMA) who are no longer walking have an increased risk of being overnourished and overweight if they otherwise have relatively good motor function, a multicenter study shows.
The results emphasize the importance of a "dedicated and experienced nutritionist" in SMA medical management, the researchers say.
About the study
posted on December 31, 2009 - 1:20am
A comprehensive set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families. The guidelines pull together recommendations previously released by other groups, such as the American Academy of Neurology, and clarify some areas in which consensus has been lacking.
After a year of planning, new recommendations for physicians caring for DMD patients have been released
posted on December 3, 2009 - 4:23pm
A comprehensive set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families.
The complete recommendations, in printable PDF format, can be read here:
posted on October 1, 2009 - 3:29pm
During the holidays, eating is as much about friends and family as it is about food. But when muscle weakness makes it difficult or impossible to eat by mouth, some shy away from coming to the table.
Nonsense, say those who’ve learned how to work around — or ignore — the social discomfort. Life’s too short to miss out on the fun. Below are adapted dining tips from therapists and people with weak...
The approval of Myozyme in 2006, after decades of research, has transformed Pompe disease from a severely disabling or fatal condition into a treatable, chronic disorder. But responses to the drug vary, its cost is high, and some questions remain unanswered.
posted on January 1, 2009 - 2:25pm
Mia Hanley of Cranston, R.I., looks pretty much like any 4-year-old preschooler. She’s a normal height and weight, walks well and has good language skills. In fact, when she started preschool at age 3, her fine motor skills were so good that she didn’t qualify for special services in that area.
Looking at Mia, most people would never suspect she spends every other Friday at Hasbro Children’s...
posted on November 1, 2007 - 9:00pm
(Note: For more on this topic, see “What Not to Eat.”)
Hank Santini, Hillary Gibson and Vincent DaSilva all have Pompe disease (acid maltase deficiency) and say they’ve benefited enormously from the advice they received on nutrition and exercise from metabolic endocrinologist Alfred Slonim, now at Columbia University in New York.
