Scott was diagnosed at age ten with MPS IVA after years of searching for answers to his various problems.
My son Scott was diagnosed at age ten with MPS IVA after years of searching for answers to his various problems, having a misdiagnosis, traveling to another state for specialists, and multiple DNA tests. MPS IVA has a treatment now. Starting it before symptoms develop is key. Usually kids don’t show symptoms until two to three years old when some damage has been done.
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Joseph Heisler, his father, and his brother, were all diagnosed with von Hippel Lindau disease (vHL) in 1990.
