Attention Tyrosinemia Community Families: Come Together for Event in Late September

September is Tyrosinemia Awareness Month!

The good people of the Network Of  Tyrosinemia Advocates (N.O.T.A.) have organized a family weekend later this month aimed to bring the Tyrosinemia community together.

Let’s learn more!

What is Tyrosinemia?

Tyrosinemia (TYR) is a serious, inherited metabolic disorder that inhibits the body’s ability to process or break down essential amino acids found in common foods. Tyrosine is a type of amino acid and is a core component of protein; without being able to process protein, and without treatment, toxic levels of tyrosine rapidly spread throughout the body, causing significant health challenges that can result in death. Presently, there are three basic kinds of hereditary tyrosinemia characterized by certain symptoms:

  • Tyrosinemia Type 1: This type is acute and attacks during infancy. Because these children can’t process proteins in food, toxicity develops. They experience bouts of gastrointestinal problems, severe diarrhea, and the inability to hold food down. Depending on the severity of type 1 TYR, some children become jaundiced, emit a strange odor, develop rickets, and may experience kidney dysfunction, tingling sensations in the extremities, and/or changes in behavior and mood, as well as other symptoms.
  • Tyrosinemia Type 2: Like type 1, type 2 tyrosinemia can affect changes in mood and behavior, cause other cognitive and developmental problems, and change skin and light sensitivities.
  • Tyrosinemia Type 3: Type 3 is largely the most uncommon type of TYR. It is characterized by cognitive issues, increased frequency of seizures, vertigo, and gait problems.

To learn more about TYR, click here.

Family Weekend

For the first time, TYR families will have an opportunity to spend a weekend together, enjoying and celebrating the TYR community and shared goals. The family event will be September 21-23, in Randleman, North Carolina.

The event will be held in the sprawling, 84-acres Victory Junction, allowing children to do what they do best— be kids, play, imagine, make friends and enjoy the adventures and experiences of camp life!

 

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