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My name is Amanda Andraos; I am 19 years old and have MSUD (Maple Syrup Urine Disease). I was diagnosed at 9 days old by doctors at the University of North Carolina hospital, and have been closely monitored since then. My early years in school, weren’t very difficult; I would take my formula in a container and just add water and drink it with my lunch. As for the food, kids used to ask why. I would simply say its how God made me. Dealing with my diet as I got older became a lot easier, simply because I became more dependent on myself instead of on my parents. I would love to say that from my experience my parents were very helpful while I was younger and now that I’m depending on myself I have learned so much. I graduated high school in 2005, and then I went straight to college. I started out at a community college to get my electives out of the way and now I’m attending the University of North Carolina at Greensboro and plan to major in nutrition. I chose nutrition due to the fact that my nutritionist Dr. Diane Frazier has been a great help with keeping up with my records and helping me learn how to take care of my own dietary needs. She has been there for me when I needed her for a simple recipe or even to ask why I am limited to only a certain amount of protein a day. Her motivation and understanding has changed my view on life and I would love to help younger children that suffer from any metabolic issues to become independent like she helped me. Another dream of mine is to help younger children with MSUD or PKU understand that it’s not a disorder, it’s life. You are able to do what you want if you put your mind to it. I attended the metabolic camp last year and saw that some of the girls were down about having their disorders, but the counselors set the bar high and showed the girls it’s not a burden to life it’s a gift from God and we need to take it and make it our own. By making it our own I mean to make something of oneself. Be who you want to be.

Adjusting Protein In An Adult With MSUD

A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated.

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I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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Advocacy

As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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A Child's Life

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