Keeping Well

Keeping fit and well, for anyone, is lifetime goal just as it is for people with PWS.  As our children start off in life, their general wellness (quite apart from PWS) is pretty good.  Out of the three of my daughters, the one with PWS was, by far and away, the healthiest of the lot and always seemed to keep good health.  As she ages (now 27), however, all sorts of things start to appear, many of these due to the fact that she is overweight (not having had the benefit of GHT) and being overweight means more stress on not just the vital organs in the body, but feet and ankles, hip joints and just general wellness.

One of IPWSO's medical consultants, Dr Susanne Blichfeldt, has put together a comprehensive document on physical health in PWS.  You can see the full article at our website.   It's full of commonsense, what to look for, what is particularly PWS, and how it affects our sons and daughters.  This is not just for the older person, but a very good guide for the health of our younger children.  It includes eyesight, dental care, the skin, tummy problems, hormone deficiency, joint problems, and a really good checklist for parents and caregivers.

While some issues are obvious, such as overweight, needing glasses, skin-picking, maybe fluid retention in the legs, there are issues that are not so obvious like osteoporosis (with up to 90% above the age of 30 suffering from this), adult onset diabetes (Type II), heart and circulation problems, breathing difficulties, sleep apnoea, sleep problems, constipation.  It's really important to have a good check-list so that both you as a parent or caregiver, know what might be affecting the person with PWS, and for the doctor or specialist to know as well.

Besides that, the more the primary caregiver knows what is possible, the better care we can offer!