STARRING SISTERS
"When I'm with Synnøve, I'm just her sister. With Silja, I have a responsibility. It's as if I have to balance four different roles. Sister, friend, mother and pedagogue."
- Solveig
Perspective from
the next of kins
"As a sister of someone with PWS syndrome, I have appreciated being welcomed as a next of kin at the "Sibling Camp" at the Frambu competence center for rare diagnoses. Here I got to meet others my age who also had a sibling with a rare syndrome. For more information about Frambu and their work, you can go to the website: Frambu.no and Frambu.no/PWS to read more about Prader Willis syndrome."
Are you related to someone with
Prader Willis syndrome and would like to know more?
Then you can go to the National Association for Prader Willis Syndrome's website. There you get in touch with other relatives and peers near you.
You can also go to IPWS which is an international association for Prader Willis and Frambu.no. Here you can find more recent information about the syndrome.
About the
"next of kin" role
"Growing up with Silja has led to a friendship with a lot of joy and laughter and a unique perspective on life. We may appear very different, but we are more alike than we think."
- Ingvild Græsdal, childhood friend
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"There was an early suspicion that Silja was different. When she was diagnosed with Prader-Willis, the future became unclear and life turned upside down! How would we deal with this? Now we feel that we have coped well and that Silja has a good life. Our worries are larger for our two other daughters who must create their own path in the uncertain future."
- Ove Årdal, father