June 2008 - Prader-Willi Syndrome Association (South Africa)

I would like to introduce you to the Senne family. Their home language is Tswana but their
contribution was written in English by Welhemina. She went to much trouble in doing it. She
shares her worries and love for Metsiatsile with us. This family joined our association in 2006
and they also attended the past two annual general meetings. This makes one wonder. There
must be more black families affected by the Prader-Willi syndrome – but where are they?
Skin picking is common among people with PWS. Parents have a hard time controlling it.
Parents should read the article Skin Picking and Prader-Willi Syndrome in this issue. Many
thanks to PWSA (USA) who gave us permission to reprint this and other articles from their
newsletter, The Gathered View.
Our newsletter carried several articles on food security and its importance in controlling the
weight of a person with PWS. Locking fridges, freezers and food cupboards may sound cruel
to outside people, but it is but one of the strategies to prevent individuals with PWS from
getting into temptation. It remains a difficult task to control the food environment of people with
PWS, however it is possible at home by taking some “drastic” measures. Please read the
article by Allen Heinemann. He is Matt‟s dad. Matt was indeed relieved when his access to the
fridge was barred! In the same vein is the article by Janalee Heinemann. It illustrates the
importance of this kind of control. Our readers are invited to share their experiences with us. It
is hard to get definite solutions or answers, but learning from each other may be just the thing!
Please take note of the advice on precautions to be taken when starting with growth hormone
therapy. This information was provided by professional people who serve on the scientific and
clinical advisory board of the PWSA (USA).
Our previous two newsletters contained information about books and DVD‟s which can be very
helpful. We didn‟t get much response from our readers. I know that the time of our parents is
very limited. They even might not have the strength or energy left to enquire about information
which appeared in our newsletter. The DVD, Behaviour, Food and Beyond, was used by a
school in Bloemfontein and they found it most useful. Read the feedback received from a
teacher. The PWSA (SA) acquired resources to assist our members and I encourage you to
make use of this opportunity. It might just help to manage the problem better!
Enquiries to our association increased. Somebody enquired about febrile convulsions. Dr.
Engela Honey responded to this question and we appreciate her ongoing involvement. Dr
Honey is always available for enquiries or consultations.
I was quite surprised to find the first notice of the 7th International Prader-Willi Syndrome
Conference in the post box. It will be held in 2010 in Taiwan. The PWS association in Taiwan
was founded in 2005 and they are indeed on the move! The notice is a friendly invitation to all
to attend the conference in Taipei.
There is some improvement in Pam Eisen‟s condition. She is the president of IPWSO. Pam
still receives chemotherapy, and she was fortunate to travel in order to visit her children.
The winter holidays are around the corner. The Bassons gives the children something to do
with their FUN pages. Also included are some recipes from Weigh-Less – how to make a
delicious tuna sandwich, tomato and roasted red pepper soup and French toast for breakfast.
Try it!
Other important bits will be found all over in this newsletter. Please take note of the annual
general meeting on 24 August 2008.
Thank you to all the co-workers!
Winter greetings
Rika du Plooy
People With Strength Volume 11 Issue 2 Page 2