Meet Cara Lee Klootwyk

Mar 2014

Written by Anthia Lindeque, Cara’s mother

Cara Lee celebrated her 40th birthday on 19 January 2014. Thank you for the birthday card she received from the association. She had a happy celebration at home with family and friends. Unfortunately her sisters are both living in the UK and could not be at the party. They sent wonderful emails with some funny memories from their childhood which I read out with the speeches.

Cara’s adult years have been an interesting journey to say the least. Cara is in a home which is part of the Challenged Adult Residential Care (CARE) in Somerset West. We have tried many ways to make things work for her well being and for the people who deal with her in the group home. She has been in the group home for the past 14 years or so. We would all have wished for Cara to be included in some way into the community and to enjoy a certain amount of independence. However, we have come to the conclusion that she will always have to have supervision and it is only through this constant supervision that we have managed to get her weight and therefore her health under control. Her weight some years ago reached 126kg and is now down to 72kg. I have to give the main credit to Charmaine Engelbrecht, who runs the group home. Charmaine followed with Cara a diet found on a PWS website.

Another contributing factor has been Topimax (epileptic medication with a weight loss side effect over a period of time). An attempt at the gym, Virgin Active back fired as there wasn’t sufficient supervision and Cara was finding all sorts of ways to find food.

Cara-Lee  Klootwyk

As Cara's weight reduced so did her health improve and as a result she is now off all diabetic meds, insulin injection and other oral medication. The one big obstacle we still had to overcome was the smoking habit!! She was down to 5 a day, but that still caused a lot of hassles. The home was very supportive and was all the way behind us to get her to stop. Finally in August last year with much drama, it was achieved!!

Cara's main interest is reading and we are always looking out for second hand book shops and fêtes. She gets the You magazine every week and reads it from front to back. She is very fond of animals and they all seem warm to her to. A pity she can't work with them. She has her own TV and computer in her room but does not write at all unless dictated to. Her hand writing is very immature. She makes Xmas and greetings cards, from recycled stuff, when she's in the mood. On the subject of mood - she is still very up and down even on the bipolar medication. Cara thinks she knows everything, will argue to the death and usually have the last word. This can be very tiring and annoys many people.


Short excerpt from: The use of Topiramate in individuals with Prader-Willi syndrome,by Dr Engela Honey. People With Strength, PWSA (SA), Volume 8 Issue 3, November 2005.

Topiramate is a new anti-epileptic drug, which has also showed to have some effect on behaviour and appetite and recent literature suggested that it has positive effect in controlling binge-eating, bulimia nervosa and obesity and also in improving mood.It seems that the use of Topiramate is indicated on an individual basis in persons with PWS in consultation with a physician who has to do regular follow-up, which should include the observation of side-effects. Further studies are also warranted.

Dale had growth hormone stimulation tests in Johannesburg in 2010, and he scored 6 out of 10 which is a failure.  We were very apprehensive to start on growth hormone therapy as we were concerned about his sleep apnea.  We wanted sleep studies done prior to starting growth hormone, and tried three tests, all of which failed as Dale would pull the wires out of his nose.  We went to Cape Town end of last year and saw a paediatric endocrinologist who is now managing Dale.   Dale started on growth hormone therapy, and has currently been taking it for one week.  We are very grateful for the support of our family GP who has been wonderful in helping us.