Question:
Female, 65 years old, Deletion subtype
My sister lives with caregivers in Alberta. She turned 65 this year, and over the last few years she has developed a number of health issues. Due to balance issues, she has been using a walker for the last couple of years. It is hard to find any information on PW and aging and was interested when I came across the PWSA blog. In the section on accelerated biological aging, the writer refers to mUPD. What is it?
And can you refer me to any other information regarding PW and aging. Thank you.
Nurse Lynn’s Response:
As people with PWS get older, doctors and families are learning more about how the body changes with age. Some people may show signs of “early aging,” like losing muscle strength, getting tired more easily, or having more balance problems. This may happen because the part of the brain that controls hormones (the hypothalamus) doesn’t work the same way in PWS. That can cause lower hormone levels and changes in muscle and bone over time.
Inside our cells, the tiny “power houses” called mitochondria can also slow down, making less energy and creating more “waste,” which can damage cells little by little. People with PWS may also have changes in how their genes are turned on or off (called epigenetics), and that may make their bodies age a bit faster.
You may have read the term mUPD — it stands for maternal uniparental disomy. That means both copies of chromosome 15 come from the mother instead of one from each parent. This is one type of PWS and can sometimes be linked to more mood or thinking changes with age.
While research is still new, studies show that staying active, getting enough sleep, eating healthy foods, and having hormones like growth hormone checked regularly can help support healthier aging in PWS.
Resources:
Attached are links to some articles related to aging in PWS
Evidence for Accelerated Biological Aging in Young Adults with Prader–Willi Syndrome – PMC
Increased brain age in adults with Prader-Willi syndrome – PubMed
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Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.