Question: Male, 41, Deletion Our son is getting a new housemate, male, age 43, also has PWS. He’s getting testosterone injections biweekly. No doctor has ever suggested that to us for our son. What are the benefits and what are the concerns of testosterone injections in adult male PWS individuals? Thank you! Nurse Lynn’s Response...
Growing up Rare
contributed by Justice Rickenbach My name is Justice Faith, and I am 20 years old. I have: Prader-Willi syndrome Narcolepsy with cataplexy Scoliosis Gastroparesis and Central adrenal insufficiency I have been dealing with many health issues my whole life. Because of my rare conditions, I have many fears. I worry about my health, friends, and,...
Ask Nurse Lynn: Getting Back on Track with Weight
Question: Female, 33, Deletion My daughter went through several programs of weight loss in Pittsburgh. Their program saved her life. They don’t offer that program anymore. Are there any other programs that can help us with her weight? She’s very heavy again. When Covid hit, it got out of control again and I feel like...
Sibling Relationships
Sibling relationships can sometimes be the most challenging, and the most rewarding. Introduce a sibling with PWS, and this spectrum often becomes even more extreme. The friction and conflict may be far more frequent and difficult to manage, but the connections and support may be far sweeter. So how do we navigate these relationships? How...
Ask Nurse Lynn: Confabulation
Question: Male, 38, Deletion I have a question about what I think is confabulation. My son occasionally says things that are just not true, and I don’t really know how to respond. I don’t want to argue with him, but I do want him to know that what he said is wrong. The first time...
PWS Aging Research and Health Update Webinar Series: Comprehensive Insights and Strategies for Caregivers
Join us for the PWS – Aging Research and Health Update Webinar series, featuring Lynn Garrick, RN, MSN, and Barb Dorn, RN, BSN. Part 1, on Tuesday, July 30, 2024, at 8:00 p.m. EST, will highlight current research on aging in PWS and common health issues reported by caregivers. The speakers will cover risk factors,...
Soleno Therapeutics Submits New Drug Application to FDA for PWS Treatment
On June 28, 2024, Soleno Therapeutics announced the company officially submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for DCCR (diazoxide choline) extended-release tablets. This new treatment targets Prader-Willi syndrome (PWS) in individuals aged 4 and older with hyperphagia. CEO Anish Bhatnagar, M.D., says, “Submission of the DCCR NDA to...
Future Planning, College, and Relationships
Contributed by anonymous As our loved ones with PWS become adults, they want the same things as anyone else. They want to feel listened to, valued, have friendships/romantic relationships, have a sense of purpose, and live independently. We need to consider how we can accomplish this while considering our loved ones’ individual abilities and needs. Transitioning Into Adulthood Planning...
Scoliosis Awareness
June is National Scoliosis Awareness Month. Scoliosis is a condition in which a person’s spine has an irregular curve. According to Pediatric Orthopaedic Dr. Harold van Bosse, MD, “Children with Prader-Willi Syndrome have about a 70% risk of developing scoliosis before the end of growth.” It is important for families to be aware of the signs, risks, and...
Ask Nurse Lynn: Estrogen and Progesterone
Question: Female, 21, Deletion My daughter with PWS (deletion) is wondering how common it is for females to be told by an endocrinologist to take estrogen and progesterone for the rest of their lives. She has already developed a blood clot (now resolved) and was told by another doctor that hormonal therapy could be a...
TREND Community
TREND Community is a “community-powered data analytics company, unlocking people’s conversations about living with rare and chronic diseases, delivering actionable, real-world insights, and driving progress in health care.” For 2.5 years PWSA | USA has been partnering with TREND Community to turn our online support groups into a source of real-world evidence. By collecting the...
Staying Safe in the Heat
Summer is well underway, and parts of the U.S. are experiencing extreme temperatures and high heat index warnings. While these conditions can pose a threat to anyone, they especially put our loved ones with PWS at risk for heat stroke and heat exhaustion. Due to the dysfunction of the hypothalamus, Individuals with PWS struggle to...
Empowering Diversity and Inclusion for the PWS Community
In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals living with PWS and their families. This initiative, undertaken with the active involvement of several community members, seeks to ensure...
Ask Nurse Lynn: Behavior Management and IEP
Question: Male, 17, Deletion How can I address my son’s behavior? Lately he gets mad and starts throwing things around, the more I ask him to stop the angrier he gets. If I ground him, he does exactly the opposite of what I ask him to do. Also, at school, teachers have told me should...
Traveling Abroad with PWS
contributed by Anne Fricke When Language Is an Obstacle The first time we traveled outside the US with Freya, I packed, as the saying goes, “everything but the kitchen sink.” Along with our ergo baby carrier and a cheap stroller we bought for the occasion, we traveled with our cooler for the growth hormone and...
A Night to Remember: The 2024 Clint Hurdle Hot Stove Dinner
The 10th Annual Clint Hurdle Hot Stove Dinner was an extraordinary success, held at the Bradenton Country Club in Bradenton, FL, on March 23, 2024. Hosted once again by the dedicated Clint and Karla Hurdle, the evening was a testament to the power of community. The Hurdles, who have a 21-year-old daughter, Madison, living with...
Help Needed: Caregivers of Children with Prader-Willi Syndrome and Repetitive Verbal Behavior
Kasey Bedard, PhD, and her team at The Chicago School are seeking caregivers of children diagnosed with Prader-Willi Syndrome (PWS) who exhibit repetitive verbal behavior for a research study at The Chicago School. This study, part of a dissertation project, aims to test interventions that caregivers can implement at home. Study Details: – Duration: 2-3...
Connections, Education, and Supervision
contributed by Jamie Prentice, Mom to Logan, 31, living with PWS Advice for Transitioning into Adulthood It is important to gather information and familiarize yourself with SSI, your state’s Department of Disabilities and Special Needs, Guardianship, Stable Accounts, and Special Needs Trusts long before your child becomes an adult. I would start taking workshops or...
Ask Nurse Lynn: Long-Standing Constipation
Question: Male, 16, UPD: My son has had issues with bowel movements and constipation his entire life. He spends long amounts of time in the bathroom and tells me that he feels like there was more that needed to come out, but he can’t get it out. A few times lately there has been blood...
Post a Message for Father’s Day
*In the interest of space, please note that when we use the term “Dad”, we not only refer to biological fathers, but also those male figures who are an outstanding, constant, and loving presence in your loved one’s life. And you single moms filling both roles, this is for you as well! We know that...
Embracing Differences | The Journey Behind “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome”
Dr. Destiny Pacha, ED.D., is thrilled to have written and published the first children’s book about Prader-Willi syndrome, It Starts With Hello: Katie’s Story About Prader-Willi Syndrome. PWSA | USA had the opportunity to sit down with Dr. Pacha to understand the meaning behind the book and what inspired her. She describes the book as...
No Limits
When we receive a diagnosis of Prader-Willi syndrome, often we also receive a litany of “cannots” and “will nevers”. We may let ourselves dwell, even if momentarily, in that world of negatives and adventures never-to-be. We mourn the future we thought we once possessed, thought our loved one possessed. Some would argue it is part...
Ask Nurse Lynn: Procreation and Genetics in PWS
Question: Female, 34, Deletion My daughter continues to wonder how/why some ladies with PWS have been able to conceive, give birth. As a teenager, an ultrasound determined that she had “follicles”, but she’s not ever menstruated. She continues to want to investigate the possibility of becoming pregnant. We’ve explained that this is highly unlikely, but...