Trish Mullaley presided over the Teen/Adult Panel as they fielded questions from the audience. She shares an account of the panel discussion.

The teen/adult panel in the background. From the left: Mark Silva, Katy Foster, Lauren Codner, Leanna Peters (hidden), Vanessa Funes, Emily Talley, Jeffery Fredricks, Melissa Berman, and Shayla Brubacher. In foreground to the left is Nikolai Rudd and to the right is Michael and Sharlene Woorman. All of these are teens and adults who have MSUD.
You must drink your formula if driving. This message was heard crystal clear at this past MSUD Symposium 2000. Teenage and adult individuals with MSUD stressed very strongly the importance of drinking formula before getting behind the wheel of a car. The drivers said that lack of formula makes them feel tired and less alert and indicated that no matter what, formula must come first. This includes during sporting activities, at school and anywhere requiring full attention.

Having MSUD does not seem to have a negative impact on sports. Those individuals with MSUD, who are also involved in sports, seem to have enough energy providing they drink plenty of their formula.

It seems that all of these bright young ladies and gentlemen are well aware of their disorder and the consequences that follow if they do not comply. When asked if any of them had ever cheated on their diet, the response seemed uniform. Cheating is really not an option since their leucine level will elevate making them feel almost drunken or lethargic. While all admitted to having done some cheating, they also indicated that they didn't feel well and felt guilty; therefore, cheating just doesn't seem worth it. Their perception of "cheating" is consuming larger amounts of leucine than their daily allotment.

When asked if their friends know about their having MSUD, most responded that they do. Responses were mixed when asked just how much their friends know about the disorder. Some are not shy and are of the opinion that they really don't care what others think. Their friends seem to understand the seriousness of the disorder, and, therefore, watch what their MSUD friend eats at a party and watch for odd behavior. Others, who are more introverted, tell their friends only what they need to know. They keep things simple. Their friends know that they have dietary restrictions for medical reasons, and that's it.

All of them seemed to understand things from a parent's perspective and showed respect and concerns for parents raising a child with MSUD. While many admitted that they didn't like having their parents hovering over them when they were younger, in hindsight, they seemed to grasp just how scary it must be for a parent to raise a child with a disorder that can be life threatening.

This was a wonderful, articulate group of young men and women. Kudos to them and their parents for a job well done!

- Trish Mullaley


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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