Search

The following essay was written by David Fischler, a high school senior in Marietta, Georgia, as part of his college application.

To survive is to carry on despite hardships or trauma. It is an act which is second nature to humanity, but for the past eighteen years not only have I survived but I have prevailed over my hardships, my greatest personal accomplishment. At the age of sixteen days old I was diagnosed with a rare metabolic disorder known as Maple Syrup Urine Disease (MSUD), which affects the liver. Growing up in an age where little was known about this disease I managed to not only survive but to continue to surpass all expectations that were placed upon me. Over the past eighteen years, I have grown and continue to live a fulfilling life under many dietary restrictions and medications. These dietary and medical needs sometimes seem overwhelming. Also, people ask "What is that stuff you take?" or "Why can’t you eat pizza?", but I have always and continue to fight through. With the support of my family, friends, and the Department of Genetics at Emory University, I have been privileged to live a life that only twenty years ago seemed unimaginable for anyone with Maple Syrup Urine Disease. Due to this disorder it has been hard to participate in sports and many other outdoor activities. I dehydrate much faster with more severe consequences than everyone else. Furthermore, I can not get hydrated with water alone and I must drink sugar water, like Gatorade. However, I have been able to participate in activities which others take for granted, like soccer and most recently marching band. Through my protein restrictive diet and many medications, I am proud that I was able to play the sport of soccer for nearly fifteen years on a championship caliber team with my peers, and I continue to be a referee in the sport that I love. Also, I am glad that last year was the first year my doctors would allow me to join my high school’s marching band. I worked hard and felt a sense of achievement when the band won third place at the Band of America Super Regional in Atlanta. This year, I am once again in the band, as I try to continue having as normal a life as possible.

Over the past several years, I have grown to understand my medical condition, studied it, and met others with it. Through these interactions I have learned that I am one of the lucky ones. I could have very easily been mentally retarded by this disorder or worse, but I am not. I have survived. I have survived to live, what so far has been, a happy and fulfilling life surrounded by people who care about me. To live and grow up as well as I have and to not only survive, but prevail over this illness, is by far my greatest personal achievement.

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.

Read More

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.

Read More

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.

Read More

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.

Read More

Emory Metabolic Camp 2018 Announcement

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

Read More

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.

Read More

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.

Read More

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

Read More

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.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates