Adults with Prader-Willi syndrome (PWS) can experience earlier-onset changes in health and daily functioning. During a 55‑minute presentation at the United in Hope PWS conference, Dr. Laura de Graaff (Erasmus MC, Rotterdam) discussed practical steps for families and clinicians.
Key takeaways- Some adults with PWS show signs consistent with premature aging (reduced mobility, cognitive changes, spine curvature, earlier cardiometabolic issues). Annual screening becomes especially important after age 30.
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Lifestyle supports with food security, tailored nutrition, behavioral support, and progressive activity can help reverse the cycle of low muscle and low activity.
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Growth hormone (GH) is beneficial for adults with PWS and can improve body composition and function. Always discuss risks/benefits with your clinician.
Prefer to watch? Jump to the video and full timestamps below.
Why adult-focused, multidisciplinary care matters
Adults with PWS can benefit from a coordinated care team familiar with the syndrome and the needs of adults. Dr. de Graaff’s center in the Netherlands has established a world-class clinic dedicated to meeting this need. The team includes:
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Endocrinology: evaluate and treat hormone disorders (e.g., thyroid, sex hormones) affecting energy, body composition, and bone health.
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Neuropsychology: assess cognitive profile and developmental level so expectations and supports match the person’s needs.
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Physicians experienced in intellectual disabilities (3+), clinical genetics, geriatrics, and a dietician trained in PWS-specific nutrition.
The team addresses four frequent challenges: hormones, diet, developmental age, and scoliosis/musculoskeletal health - all closely tied to mobility and long-term health.
Four common challenges addressed at the clinic
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Hormones: People with PWS can have several hormone deficiencies that can lead to tiredness and weight gain. These include thyroid issues and a lack of testosterone or estrogen. As stated in the presentation, 99% of people with PWS lack these sex hormones, which are important for body composition and bone health. Starting testosterone at a low dose and increasing it slowly was reported to lead to little or no behavioral issues, and supports physical health in the long term.
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Diet: People with PWS have hyperphagia, a low metabolic rate, and low muscle tone. Because a typical diet may lead to weight gain, it is important to see a dietician who understands PWS.
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Developmental age: In the clinic, the neuropsychologist helps assess developmental age. This prevents overestimation so the person can be approached at an appropriate cognitive level. It also helps families at home, or caregivers in group homes, work with the person in a developmentally appropriate way to encourage exercise. This helps prevent obesity and related complications.
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Scoliosis: People with PWS often have scoliosis, so it is important to check the musculoskeletal system and keep people mobile.
What do we mean by “premature aging” in PWS?
Clinicians observe that some adults with PWS may begin to look and function “older” earlier - wrinkles, gray hair, increased back curvature, reduced mobility, and cognitive changes. Imaging studies cited in the talk suggest a “brain age” that can exceed calendar age in some individuals. The pattern appears less common among those using GH, though more research is needed to understand why.
Age-related conditions: why screening after 30 matters
Across large clinic cohorts, serious physical health problems are uncommon before 25, can emerge between 25 to 30, and are more common after 30 (e.g., diabetes, dyslipidemia, hypertension). A yearly screening plan after 30 helps catch issues early. Many adults in their 50s to 60s have lower energy and mobility, making proactive support essential.
Breaking the “vicious circle”
Lower muscle mass leads to activity feeling harder, which leads to less activity, which leads to weight gain. A structured program can flip this to a positive cycle. Provide behavioral supports to enable activity, PWS-savvy nutrition, a predictable food-secure environment (critical for reducing stress around food), and regular exercise. Growth hormone can help increase muscle mass, provide more energy, and allow for more activity.
Research spotlight: growth hormone in adults with PWS
The clinic described a research study following eligible adults starting GH, with regular 3-month assessments of bone density, muscle mass, fat mass, and functional strength:
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30-second sit-to-stand (max reps in 30 seconds)
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Five-times sit-to-stand (fastest time)
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Grip strength (dynamometer, both hands)
Early observations suggest improved mobility around about 6 months after beginning growth hormone. Formal results are in progress.
Practical steps for families and caregivers
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Ask your clinician for an annual screening plan after age 30 (metabolic labs, blood pressure, lipids, and bone health).
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Discuss hormone evaluation (thyroid, sex hormones, GH candidacy) and an evidence-based dosing and monitoring plan when appropriate.
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Build a PWS-informed lifestyle program: a food-secure environment, tailored nutrition, behavioral supports, and progressive activity.
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If weight or other factors limit eligibility for treatments, ask about phased approaches and supports that make activity more feasible.
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Whenever possible, work with providers who understand PWS or are open to PWS-specific guidance.
Watch the presentation
Recorded at the FPWR Conference. Presented by Dr. Laura de Graaff, Erasmus MC (55 minutes).
Full Presentation Summary With Timestamps
0:00 Welcome
1:43 Why a clinic for adults?
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There is a need for doctors experienced in PWS to serve the adult PWS population, and not many are available; therefore, Dr. de Graaff and colleagues established a dedicated adult PWS clinic.
4:19 About the clinic
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The clinic includes 3 doctors and a nurse practitioner. It serves over 200 adults with PWS (in addition to pediatric patients).
5:20 Multidisciplinary team
- It is important to have a multidisciplinary team due to the complexity of PWS. Their team includes:
- Endocrinologist
- Neuropsychologist
- 3 physicians for intellectual disabilities
- Clinical geneticists
- Geriatrician
- Dietician for people with intellectual disabilities that includes a specialized diet for people with PWS.
7:50 The added benefit of a multidisciplinary team
- The clinic addresses four common challenges for people with PWS
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Hormones. People with PWS can have several hormone deficiencies that can lead to tiredness and weight gain. These include thyroid issues and a lack of testosterone or estrogen. 99% of people with PWS lack these sex hormones, which are important for body composition and bone health. Starting testosterone at a low dose and increasing it slowly was noted to lead to little or no behavioral issues. This approach is better for physical health and may help prevent future problems.
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Diet. Because people with PWS have hyperphagia, a low metabolic rate, and low muscle tone, a typical diet often leads to weight gain. It is important to see a dietician who understands PWS.
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Developmental age. In the clinic, the neuropsychologist helps assess developmental age. This prevents overestimation so the person can be approached at an appropriate cognitive level. It also helps families at home, or caregivers who manage a group home, work with the person in a developmentally appropriate way to encourage exercise. This can help prevent obesity and related complications.
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15:30 Premature aging in PWS?
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People with PWS often have signs of premature aging. Around age 30, they may begin to look older, with wrinkles, gray hair, more back curvature, cognitive decline, decreased mobility, and loss of muscle mass. The reason is not yet known, but these signs are seen less often in individuals who use growth hormone.
17:37 Brain imaging in people with PWS
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When brain imaging has been done on people with PWS, it shows a brain age 8 to 10 years older than their calendar age. Some individuals in their 30s may require the same level of support as someone in their 70s.
18:27 Age-related disorders
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Diabetes, hypertension, and lipid problems may appear earlier than expected.
19:12 INfoRMEd-PWS Network
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This is a large network of adult PWS endocrinologists from many countries. They have investigated problems seen in 800 adults with PWS. This will allow them to draw conclusions about medical data for people with PWS and improve medical care for adults with PWS.
20:00 Improving medical care for adults with rare genetic syndromes
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The team has published articles and manuscripts that provide recommendations for providers caring for people with PWS. These publications discuss health problems seen in PWS and problems that can be missed if you do not look for them. You may not notice a health problem until it is advanced. For this reason, screening is important, especially after age 30.
21:23 Looking at the Health Problems
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In reviewing health data from 800 adults with PWS, serious physical health issues are uncommon before age 25. Between ages 25 and 30, concerns may begin to emerge, and after 30, conditions such as diabetes, high cholesterol, and hypertension become much more common. This is why yearly health screenings are especially important once someone is over 30.
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Many people with PWS who are 55 to 60 have less mobility and less energy to move. They may also have other muscle issues that make them less mobile.
23:04 Vicious circle of PWS
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People with PWS have less muscle and more fat. Exercise is hard due to lower muscle strength. They cannot keep up with their peers, so they are less willing to exercise. Therefore, they exercise less, which leads back to the start of the cycle and contributes to obesity. With the right supports, this cycle can be changed to a positive one.
24:33 Our standard approach to starting Growth Hormone in PWS
- The clinic uses something called Combined Lifestyle Interventions. The team looks at the mental support needed to start exercising, addresses behavioral issues, reviews nutrition, and helps people get started with exercise. The clinic also has a personal trainer who trains groups of people with PWS.
- Food security is most important. In the Netherlands, many adults live in group homes, and food is often not locked, which causes stress and can lead to obesity. The clinic talks with group homes about food security.
- Once a person has completed this lifestyle intervention for about one year, insurance companies may reimburse GLP-1 medications. When BMI is below 40, growth hormone can start (many adults with PWS do not use growth hormone because insurance does not pay for it).
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When muscle mass increases, people with PWS tend to be more active because they have more energy and are generally happier.
27:57 Why are people with PWS aging prematurely?
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We do not yet understand why adults need growth hormone or why they may age prematurely without it. Evidence of premature aging can be seen in geriatric scores and in biomarkers in blood and cells.
29:43 Study Design
- The clinic is conducting a study to understand premature aging, general health, and the effect of growth hormone in adults with PWS. The clinic has 450 people with PWS (200 adults). Patients are screened for contraindications and, if eligible, are added to the study and begin taking growth hormone. There are currently 25 patients in this FPWR-funded study.
- Once on growth hormone, people are checked every three months. Checkups include bone density, muscle mass, fat mass, and muscle strength measurements.
- Muscle strength check-ins:
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- 30-second sit-to-stand test- as many times in 30 seconds.
- 5x sit up and stand as fast as possible.
- Grip strength with a dynamometer- 3 times left and right
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- It takes about 6 months to see improvement in the sit-to-stand and you can see the muscle and body responding to growth hormone.
35:00 Clinical improvement
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After these 6 months, patients are more mobile. Anecdotally, patients who could not climb stairs before growth hormone were able to climb them after 6 months. Others were able to go on day trips with their group homes because movement and walking became easier.
37:14 Observations in PWS adults receiving GH
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Body composition: less fat, more muscle
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More muscle: more calories burned
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Less premature aging (work in progress)
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It seems like the body and cells are renewing.
38:00 Conclusion
- People with PWS experience premature aging, which can include reduced mobility and cognition.
- There is an increase in age-related disorders beginning around age 30.
- Screening should be conducted annually for early identification.
- Adults with PWS may benefit from growth hormone; improved strength has been observed after about 6 months of treatment.
Recap
Aging in PWS is easier to manage with coordinated, adult-focused care. After age 30, plan yearly checks for diabetes, cholesterol, and blood pressure. Start with Combined Lifestyle Interventions: behavioral support to help with activity, PWS-informed nutrition, a food-secure environment, and steady exercise. After about a year of lifestyle support, some people qualify for GLP-1 medications. Growth hormone may be started when BMI is below 40 and other criteria and coverage are met. Many families in this program have reported better strength and mobility at around six months.
Watch the presentation, share it with your care team, and ask your clinician for a plan that fits your family.
