My name is Sharlene Balinsky. I am 38 years old and have classic MSUD. I live in Montreal, Canada with my boyfriend, and work as a receptionist in an office. I recently had surgery for a cyst on my ovary. Here’s how it happened.

I was having stomach pain for quite a while. When it didn’t get better I decided to go and check out the situation. First, I went to my family doctor who thought it might be the flu. She told me to give it a week and come back if it wasn’t any better. In my opinion, I was getting worse. I had constant headaches. So, I called my family doctor five days later and told her how I was feeling. By this point I was already starting to lose weight and not eating much due to the severe pain. All in all, I lost 11 or 12 pounds, and went from 96 to 85 pounds.

I went back to my family doctor. She did all kinds of tests, and decided to send me for an X-ray to see if anything showed that could not be picked up otherwise. After 10 days, what seemed like a long time, my family doctor got the results. It showed a big cyst on my ovary. She sent me to an OB/GYN, who is very good and highly recommended, to verify this. I went to meet with him and he confirmed that it was a big cyst and needed to be removed.

Not long after, he coordinated the surgery with the hospital and my metabolic doctor.

At one point while all this was going on I was dizzy, had a terrible headache and hallucinating in the middle of the night. The next day I called Dr. Mitchell and told him what had happened.

I went the following day to have my level checked and got the results a week later. They said I was probably hallucinating because my levels were around 1401!

March 2nd was the day I went in for surgery. After being on IV glucose and lipids for 24 hours, my levels dropped down to 700. The surgery was much longer than expected but everything went well. The surgeon consulted Dr. Mitchell all the way. After surgery I was able to drink my formula and had a complete recovery. I did not regain all the weight, but am now 91 pounds and feel good. thanks to all the doctors for all the great care!

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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