Families
Welcome!
We are in touch with about 1000 families and people with PWS throughout the UK, and this number is growing every year. We provide support in many different ways to parents, carers and relatives of people with PWS:
- Leaflets and books about PWS and ways of managing it. See the full list on our publications page.
- Opportunities to meet other families and our family days and weekends.
- We are also here to offer you in-depth support at times of crisis or transition.
- We aim to raise awareness about the special needs of people with PWS and their families and we regularly join with other rare disability groups to champion the rights of people with PWS.
- We work towards eliminating the challenges of Prader-Willi syndrome by actively supporting and promoting research into PWS.
Newly diagnosed
If you are the parent, carer or relative of a child or person with PWS, our dedicated team is on hand to offer you tailored support and answer your questions about the syndrome. If you wish, we can put you in contact with others.
Brothers and sisters
If you are the brother or sister of someone with PWS, click here for a downloadable pdf which discusses what PWS is, how it affects others in the family, and how you can help your brother and sister face the challenges the syndrome brings - as well as some tips on how you can face them too.
Grandparents
If you are the grandparent of someone with PWS, especially if they have just been diagnosed, click here for a downloadable pdf with a message and advice from a fellow grandparent as to how you can help your grandchild and their family.
Help for families with children and adults at different ages
PWS shows itself in different ways depending on the age of the child or adult. For that reason, we have provided information for several age groups. If this is your first visit to our website, we suggest that you visit these pages first. Because we want to provide as much information as possible about PWS, you may find yourself thinking that everything about PWS is negative. This is not so. On these pages you will find suggestions on managing the syndrome and much to make you feel more positive about the future.
Share your experiences and contact others
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Discussion forum
This is a community blogsite which gives people the opportunity to share blogs about their experience of living with PWS, as well as asking questions of other members of the forum.
PWS Instant News
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Age groups:
0 - 5 years
If you have just received a diagnosis of PWS for your child, you may be experiencing one or more of many different emotions: grief, depression, anger, bewilderment, guilt, disbelief, denial, rejection, relief, or challenge. All of these are completely natural feelings which most parents and family members experience.
It is important to remember that your child is an individual in their own right - no two children with PWS are exactly the same, and they will have their own strengths and weaknesses, as do other children. The degree to which different PWS features manifest in your child may vary from mild to severe.
5 - 10 years
As for any other child, reaching school age brings with many new experiences and challenges. For those with PWS, there is the additional challenge of controlling access to food within other environments besides the home, but this is possible if everyone is aware of the situation and willing to work positively to manage it.
Most children will have begun to display symptoms of the characteristic appetite, but some seem to show little interest, even at this age.
10 - 15 years
This can be a difficult age for any child and family, but this is not always the case - and the same is true for youngsters with PWS. However, transition to senior or high school can raise some issues and it is often at this age that peers start to pull ahead of the child with PWS in terms of emotional and sexual development.
15 - 19 years
These are the transition years from childhood to adult, and it is important to plan carefully for this. Once a person reaches 18 years, legally they can have complete autonomy from their parents, although special measures may be put in place for those with learning disabilities.
19 - 25 years
Adults with PWS can lead very worthwhile lives, although few find permanent full-time jobs because of problems with food, difficulties in adapting to change, emotional instability, and becoming easily tired. However, most will benefit from being able to take part in voluntary work of various kinds or part-time jobs.
25 years and older
As the person with PWS matures into adulthood, some people find that behaviours and other challenges begin to mellow. For others, there be issues to contend with such as leaving home and how that affects independence.
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