UF Health Prader-Willi Syndrome Program


Prader-Willi Syndrome is typically
diagnosed nowadays in infancy, our average age of diagnosis in our clinic
is in at the range of about 1.2 months of age and that gives us the opportunity
to be preventive in terms of their care. Tthere are physical and behavioral issues
that are listed on the Internet is being common in Prader-Willi Syndrome however,
we can ameliorate most of those issues. They can have short stature. They
can’t have obesity, but growth hormone treatment can help with both of those.
Diet and exercise can help treat the obesity. They can have cognitive delays,
but growth hormone treatment can help that and they can have disruptive or
aggressive behaviors, but good parenting techniques and various parent-child
interaction training and ABA therapy can help prevent those problems as well. My
passion for this actually came because right now people with Prader-Willi
syndrome can never live independently because of the food. So they’re
constantly hungry, they have to be watched 24/7. So they’re either in their
parents home with supervision constantly or in a group home with constant
supervision. It just broke my heart to see the adults who would say, if I didn’t
have this, I would have done this. I would have been this you know. I would have
been a teacher. I would have been a vet. I would have done you know all these
different things in life, if I wasn’t hungry all the time. And so it’s really,
really an unfair situation that they can’t be independent and so that’s why
I’m so passionate about trying to find a treatment so that those growing up can
be independent when they grow up.

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