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Warmest welcome to our new volunteer!! Marcin! :)

The Foundation of Prader – Willi Research are so pleased to introduce our new volunteer Marcin, he is a Daddy to a beautiful little girl Seren who has PWS and has very kindly volunteered to write blogs for us on PWS news to share to our community.

Marcin and Seren

Please read his first blog here –

Bone health in people with Prader-Willi Syndrome.

What’s the news?

An international team of scientists have reported outcomes linked to bone-related health in a recent study that included 354 people from Australia, Spain, France, Italy, Sweden and the Netherlands. They have concluded that people living with PWS may be at higher risk from bone-related conditions such as osteoporosis and osteopenia (bone weakening), scoliosis (twist or curvature of the spine), or be more prone to fractures.

What’s the science?

The study looked at people from a range of ages. It was noted that a large proportion (roughly 80%) of the subjects had scoliosis, but there was no association between scoliosis, osteoporosis or fractures. Osteoporosis was found to be more common in male patients. Statisitical tests show that hypogonadism (reduced production of sex hormones such as testosterone and estrogen) was a significant risk factor for osteoporosis in both men and women. Other factors include low dairy intake, reduced mobility and corticosteroid (steroid) use. A small proportion of the test group had previously suffered from spontaneous fractures – fractures or breaks that don’t result from a specific injury.

What does this mean  for us in  the PWS community?

Recommendations have been drawn up to have people with PWS undergo assessment for osteoporosis and scoliosis, and regular screening for hypogonadism. It is important they have a balanced diet, incorporating calcium, vitamin D and exercise to promote bone health. It was also noted that people with PWS tend to have higher pain thresholds, and this may make diagnosing fractures more difficult. IT is important to take note of refusals to participate in activity or behavioral changes as this may be an indication of an impact on bone-health.

More information is available at