Fortunately, much has changed in the past 25 years and the diagnosis of maple syrup urine disease is handled and not construed as the end of the world. When I was born in 1988, the diagnosis of MSUD (if diagnosis took place at all) signified the beginning of an impeccably scripted horror story that was about to begin. In general there was lack of knowledge by virtually every doctor you would come across and utter frustration (mentally, physically, and even financially) for both the parents and child. I was one of the lucky ones. I was diagnosed at 16 days old and was treated just in time leading to no permanent damage, but it was not easy on my parents. As I look back on it, it was a nightmare for them those first few days, weeks, and years as they tried to pay for my medications and keep me healthy.  As rough as it was they persevered and I survived.

By the time I reached the seventh grade, I was curious about “what was wrong with me.” I knew I was not allowed to eat any pizza or hamburgers, and I had been in and out of hospitals. However, I still knew little more than that. That spring, my biology teacher assigned open topic research papers. Mine…was MSUD. I began reading and learning and for the first time I had an idea about MSUD. I can honestly say I appreciated understanding a great amount of the details that seemed unclear at the time. I now may have even known more than my parents. However, the true benefits would come from the research itself. Until then I viewed science as just another class that was pretty easy, and I was pretty good in it. The class I had really enjoyed was math. However, following that project I developed a passion for science, in particular the biology and the chemistry. Fast forward 18 years, and I have graduated from the Georgia Institute of Technology with a degree in Biochemistry with honors, and am currently pursuing a PhD in the field of analytical chemistry at The University of Georgia.  Yes, being born with MSUD is difficult for all those involved. It is difficult road, but in my case it also shaped who I became. That day in seventh grade, if I had not found a project that inspired me…who knows? I may have been a mathematician today.  Life with MSUD has lead me to this. So, as tough as it may be, MSUD is a part of me in more ways than just a disease. So, as tough as it may be, just remember: Keep looking. Every cloud has a silver lining…I have found mine.

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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A Child's Life

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