Lived Experiences of Teens and Adults in North America Who Grew Up With a Sibling Diagnosed With Prader Willi Syndrome.
Lauren Schwartz, Abigail TurnWald, Madelyn Roth and 1 others
PMID 42286844WHAT IT FOUND
Siblings of people with Prader-Willi syndrome reported stress, anxiety, and food-related struggles, but also greater empathy and career direction toward healthcare or advocacy.
The most requested supports were peer connection with other PWS siblings and one-on-one time with parents.
Key findings
01Siblings reported stress (55%), anxiety (48%), embarrassment (24%), and frustration (16%) as emotional impacts of growing up with a sibling with PWS.
0264% of siblings reported being highly focused on food compared with peers, 3 (all female) reported an eating disorder diagnosis, and 24% described needing secrecy around eating.
03Siblings reported developing greater empathy, patience, and compassion, and 36% expressed interest in careers in healthcare, science, education, or disability advocacy. The two most requested coping resources were connecting with other PWS siblings and spending individual time with parents.
STILL TO COME
How it was doneWhat they found
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What it does not show
Twenty-five participants recruited from North America (22 US, 3 Canada), all English-speaking, so findings may not transfer to other cultural or healthcare contexts. Data were captured through the interviewer's written notes rather than audio recording, which may have limited the completeness of what was recorded. The sample was self-selected through Facebook groups and advocacy organizations, so it may overrepresent siblings who are already engaged with the PWS community. No structured clinical assessments were used, so the study could not confirm or rule out diagnoses such as PTSD or specific eating disorders. The reported frequencies (e.g., 55%, 64%) are descriptive counts within a small sample and do not support statistical generalisation to the broader PWS sibling population.
Declared interests
Funded by the Foundation for Prader-Willi Research. The authors declare no conflicts of interest.
The easy way to misread this
Do not read the three eating disorder diagnoses as evidence of a high prevalence in PWS siblings. The authors note the sample size is limited, and the reported frequencies are described as descriptive rather than inferential. Three out of 25 is a small count that does not support a population-level conclusion.