With this issue I finish covering our last Symposium except for the talk given by Samantha Whitney from Australia. I am keeping her interesting view of living with MSUD for the fall/winter issue. In that issue I would like to feature the teens and adults with MSUD.
I would like to hear from all of you young people with MSUD. In this issue we announce Eric Rudd's graduation from college and several others have sent in their high school and college announcements over the years. However, there are many of you we haven't heard from. Why not write a short note - or a full-length article would be fine - about what you are doing now, how you manage your diet, how you deal with illnesses and maybe share how you feel about having MSUD or anything else you care to write. Those who have written before, send me an update.
Earlier this year I became acquainted with a 39-year old woman with MSUD. When we met Cindy Blau at Symposium '96, we assumed she was the oldest person living with MSUD in the U.S.A. and possibly in the world. Then Emily Talley contacted us, and she is almost two years older than Cindy. Emily has a mild form of MSUD and controls her levels through diet alone.
I have enjoyed getting to know Emily through e-mail. She has recently been accepted to graduate school at the University of Minnesota to pursue an MS degree in software engineering with applications to database design and networking. But I will let her tell more about herself in our fall/winter issue.
Shayla is finally rid of her headaches and is much more energetic than she had been for years. What made the difference? We finally found the key to lowering her leucine level. For many years her leucine level stayed within the 7 to 9 mg/dl (550 to 700 µmol/l) range. Trying to lower her already very restricted dietary protein only made her hungry, irritable and more tired. Except for periods of stress, all three levels seemed to stay very constant. After the last Symposium she was determined to try adding isoleucine and valine supplements to her formula. Although she still tolerates about the same amount of protein, her leucine gradually dropped to the 3 to 4 mg/dl (250 to 300 µmol/l). She looks, thinks, feels and acts better and has finally lost some weight. We are all pleased with the results.
Shayla is now washing dishes part-time at a local restaurant. It is a demanding job during the tourist season. She made the mistake of thinking she was too busy to take time to eat on her first day alone on the job. She worked almost 10 hours and was dragging by the time she came home. She was tired and had a headache the next morning. Blood sent for testing the next morning revealed a level of 12 mg/dl. She also started her menstrual period that afternoon after blood was taken, so we are not sure if the elevation was solely from the long fast. She learned a lesson and now grabs a bite to eat along with her formula sometime during work hours.
I think the article on nutrition in this issue has some very important information. It is good to discuss the nutritional status of MSUD patients with your doctor and dietitian.
- Wayne, Joyce, and Shayla Brubacher