If you or your child have Prader-Willi syndrome (PWS), our clinic at UPMC Children's Hospital can help.
As the only interdisciplinary PWS clinic in the tri-state area (Pa., W.Va., and eastern Ohio), Our skilled team of experts works together to address the unique care needs of those with this rare disease.
What Is Prader-Willi Syndrome (PWS)?
PWS is a genetic disorder that occurs in 1 out of every 15,000 births.
Most of the time, it's not inherited. Instead, it's caused by a random occurrence during early development of the fetus, which leads to loss of genetic material in one of the chromosomes (chromosome 15).
PWS can cause a range of symptoms that differ among people and can change over time.
Some symptoms include:
- Poor muscle tone, especially in newborns and young infants.
- Difficulties with feeding in the first few months of life.
- Difficulties with weight gain in the first one to two years of life.
- A low metabolism, which leads to rapid weight gain after ages 2-3, unless food intake is strictly controlled.
- Growth hormone deficiency and other hormone problems.
- Small hands and feet.
- A curved spine (scoliosis).
- Speech problems.
- Learning disabilities.
- Breathing problems while sleeping.
- Behavioral problems.
There is no cure for PWS. But there are treatments to help manage many of the symptoms.
About the Interdisciplinary Prader-Willi Syndrome Clinic at UPMC Children's
It's easy to feel overwhelmed when a child or loved one has PWS. This genetic disorder causes a range of challenging symptoms.
The team at the Interdisciplinary PWS Clinic:
- Knows the needs of people with PWS.
- Has advanced training in all aspects of PWS care for every age.
- Provide personal, family-centered care.
The clinic brings together experts to address:
- Genetic testing and counseling.
- Special medical needs.
- Hormonal challenges and treatment.
- Nutrition education and counseling for healthy growth and weight.
Having access to your team at UPMC Children's improves discourse and provides seamless care. It also reduces the need to make many appointments with each specialist.
Your PWS care team
- Children's endocrine and hormone disorders: Alissa Guarneri, MD.
- Genetic health care: Suneeta Madan-Khetarpal, MD and Ann Johansson, PhD, CRNP.
- Genetic counseling: Roxanne Acquaro, MS, LCGC.
- Nutrition: Sharon Strohm, MBA, RD.
- Care coordinator: Ann Johansson, PhD, CRNP.
Why Choose UPMC Children's Hospital of Pittsburgh for PWS Care?
At UPMC Children's, our mission is to transform the lives of kids, teens, and young adults. We do this through excellence in patient care, teaching, research, and advocacy.
UPMC Children's and our team of experts are:
- Pioneers in designing new and improved ways to treat PWS and other rare diseases.
- Focused on providing safe, top-notch, family-centered care.
- Respected and renowned teachers of future children's health care specialists.
As a result, we have become a local, national, and worldwide leader in treating childhood conditions and diseases.
UPMC Children's Hospital and our doctors and staff have received many awards and honors.
We're also nationally ranked on U.S. News & World Report's annual Honor Roll of America's Best Children's Hospitals.
Contact the Interdisciplinary Prader-Willi Syndrome Clinic
Contact the PWS clinic at UPMC Children's Hospital to schedule a consult or appointment. Or call 412-692-5211 and give Prader-Willi syndrome as the reason for your visit.
For general questions about the clinic, call 412-692-6806.
Our address:
UPMC Children's Hospital of Pittsburgh
4401 Penn Ave., 3rd floor
Pittsburgh, PA 15224
