I started looking at colleges at age 9. Two years earlier, my parents made my brother and I sign a contract that stipulated that we would attend four years of college. My parents didn't want me to live in fear or feel restricted by my diet. They wanted me to feel empowered. I was put in charge of my diet at age 7. I was responsible for making my drink and finishing it. I had always been very conscientious about eating the correct foods. I rarely ate foods or amounts of foods that I wasn't allowed. My parents made sure that I was aware of the consequences that could have on my body, my mind, and my life. I had to own up to my actions - and take responsibility for my choices.

I was used to managing a heavy schedule from high school. Since I did both sports and acting, I was at school from 7:15 am until 6:30 pm. I had a large volume of formula to drink, so I brought my drink with me. I kept it in the nurse's refrigerator and went in there periodically to fill up a bottle that I could carry around with me easily.

When I first started high school I got into trouble because I burned through my calorie intake playing both soccer and tennis. My leucine level rose to 1390. My diet had to be restructured to allow more protein from natural foods. But because of the mess up, not only did I almost die, but I missed my last growth spurt. I was catabolizing (breaking down) protein, which is just as bad, if not worse, than cheating. Your body burns up all the calories, and in order to keep functioning, it gets energy by burning up your stored protein.

My experiences in high school prepared me well for college. College is a lot of work and provides a lot of academic pressure, along with temptations from peers, parties, etc. both in the way of food and in the way of alcohol. Managing the stress of school along with managing your diet will take some getting used to, even if you are extremely responsible about it.

For me, going to a smaller college made a lot of sense since the class sizes are smaller, with more one-on-one attention. This makes it easier to get help as your teachers notice when you are there and not, and when you might be sick. Not only that, but they are more apt to be able to accommodate you if you find you are behind. To avoid getting lost in the crowd - and to develop a personal connection with your teacher, I suggest sitting close to the front of the class. Participate, and often speak with your teacher afterwards.

That way you won't be just a name to them.

Here are some suggestions for teens planning to live at college and their parents:

  1. Make sure you have a cell phone or a pager to use for emergencies.
  2. Have your doctor write down a protocol for doctors to follow in case of an emergency AND have a list of IMPORTANT NUMBERS to CALL. If there is an emergency, make sure that any doctor in any hospital knows that they MUST call your MSUD doctor to help treat him.
  3. Start getting in the habit of conducting a DNPH test - so that you know how it looks when levels are under control and when they are off. I got to be so good, that I could tell how off my levels were by how cloudy the test was.
  4. Implement splitting up and taking formula and any low protein snack whenever hungry, even if it isn't meal time. Make sure that key people in the school (high school and college) know about the illness. In college, the key people are the teachers, counselor, the nurse, roommate and most importantly, the Residential Assistant (R.A.). In high school, it's the teachers, nurse, and principal.
  5. Give each of these people a copy of the protocol and make sure that they know what to do in case of an emergency. This is essential if you lose the ability to communicate to EMTs and doctors. In college, this happened to me at least once a year, with the exception of my senior year.
  6. Be sure that your teachers understand that there will be days when you might just be fighting something, and might not be totally there. If you get sick, you must be responsible for letting the school or teacher know, and making up the work.

It is important that anyone planning to live independently know as much as he or she can about their health. Ask your doctor questions about what happens when - give examples and hypotheticals. Become as knowledgeable as possible so that you will be able to become your best advocate.

Personally, I love learning - and work my tail off to meet every challenge. I knew that if I could manage my diet at home along with school work and activities, then I would probably be able to do it on my own. And that was something I strived to do. I wanted to be an actor. To live in L.A. And I had a great support system.

I still think that that is the most important thing.


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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