A Path Less Travelled

by Jackie Waters (PWSA UK)

You never forget the day your child was diagnosed with PWS. It is one of those days when life takes a sudden lurch onto a completely new path, and signposts are few and far between.

PWS is rare. It is a path less travelled by most of people in this world, but it is a path from which there is no turning back as long as you have a son or daughter with PWS. 

My daughter, Esther was diagnosed in 1983, when she was nearly five years old. I still remember the feeling of shock and numbness.  What IS this thing she has? The doctor who diagnosed her had only seen one other child in the past, and could tell me little, except to cut down on food. The UK Association was still very much in its infancy and got most of its information from the USA. When that finally reached me, over a month after Esther was diagnosed, I read that my daughter was likely to turn into something I really did not want to deal with. 

Many years down that path and looking back, it has been quite a journey. I have met people I would never otherwise have met, from all classes, races and cultures, who I can talk to like family – because only they understand. I have learned about genetics, endocrinology, nutrition, psychology, orthopaedics and a host of other things. Above all I have learned patience and tolerance.

Nowadays, there is a lot of information out there for many parents who have a child diagnosed with PWS –though there remain many unanswered questions. But some parents, who don’t have access to the internet, to other families, or to knowledgeable medical  professionals, are even now in the same situation as I was in 1983 – alone and unsure and, quite probably, without even a diagnosis.

IPWSO reaches out especially to these parents to let them know they are not alone; that there are signposts on the path and that there are others who have trodden this path before them, and who can help, even if they are people they do not yet know.  

IPWSO is having an awareness drive this Easter, asking for donations to further help those in the world who need the critical information that was not available when my daughter was small.  Please help – donate the cost of a few Easter eggs, and encourage your friends also! 

 

IPWSO's new FamCare (Family Care) project

IPWSO is exited to tell you about a new venture it is undertaking.  Called "FamCare", it is designed to find ways of supporting families around the world who are caring for their adult child with PWS at home.  We know that there are many of you doing this and looking for answers to questions, or just for someone else to say, "we know what you're going through".

Georgina Loughnan, from Sydney, Australia, who is an IPWSO Board member, is heading up this new project.  She has worked over the past 21 years as a clinician with adults and adolescents with PWS.  She has seen families continually work hard to provide and access the best care possible for their adult children with PWS, and recognises the difficulty that this can pose.  She says:

"As children develop into adolescents and adults, families continue to struggle to find the most appropriate setting for them.  It is these areas that need to be addressed as soon as possible for the adult child with PWS, to ensure that every environment they spent time in is as appropriate to the needs of someone with PWS as possible.

"Finding a school that will step up to the challenges demanded by someone with PWS is a difficult task.  The school years can be most rewarding and above all, secure for a child with PWS if the service providers fully understand the syndrome and the specific needs it brings.  On leaving school, the adult child with PWS faces a whole new lifestyle, one that inevitably offers many opportunities for great independence and high hopes.  However, people with PWS can never survive well with independence, especially in travel or situations that provide even the hint of access to food.

"All environments into which adults with PWS venture need to be appropriately managed to prevent the development of overweight and difficult behaviour.  Where an adult child with PWS remains living at home with the family, it will always be up to the family members and any other people supporting the adult with PWS to make provisions for the best possible environment."

FamCare's aim is to support families who need help, inspiration, new ideas, and just plain common-sense answers to the every-day problems that arise in caring for and managing the situations that arise when living with an adult with PWS at home. 

Watch this space... there will be more!

February at IPWSO

February has been busy, as usual.  We have had several requests for help and been able to send information and network with other professionals in a bid to help our families across the world.

A 26 yr old woman with PWS living in Kuwait who has had little or no support throughout her life.  At this time we don’t have educational material in Arabic, so we contacted one of our consultants in the States who is now following this case and supporting the medical professionals.  We had a similar case in Sudan which has brought up the same problems of having no educational material in Arabic available yet.

We sent information to a doctor in New Delhi about bariatric surgery in PWS, and supported another enquiry from India with a free diagnosis at BIRD for a 20 year old patient with a clinical diagnosis of PWS.  Our professional delegates in Lithuania and also Guatemala requested instructions on sending blood samples to our lab in Italy for a suspect case of PWS. 

In Malaysia, we were delighted to learn of the first gathering of PWS families in Kuala Lumpur on 19^th February.  This coincided with a new contact from Malaysia needing help and we were able to put them in contact with our professional delegate, and the new family gathering.  They were delighted and relieved as the only information they’d been able to receive was in Singapore, which meant the financial cost to the family was quite high.  

We had a request for information for medical references from an English family living in Dubai, butthis is another area where we are in the early stages of trying to build professional networks.  We sent her our packages of information.  Other educational and support information was sent to Porto Rico where they are keen to establish a parent support group in her country, and educational information was sent to the PWS Association in Colombia.

Our parent delegate in Spain put us the following question: ”We have problems here in Spain because some doctors do not allow GH therapy on several children with PWS that are only 11-14 years old. What is happening in the rest of Europe or the world? Do you know?”  His request was sent out to most of our member who immediately replied to him.

On Leap Day, February 29th, BIRD organised a wonderful event in a beautiful theatre in Vicenza (Italy) to celebrate the International Rare Diseases Day.  Over 1,000 students and their teachers from local high schools participated.  Giorgio gave a short talk about his experience as a parent, then sang "Ich Auch" (listen here) at the end, with great success!
 

Finally, we are indebted to our wonderful supporters who have lit candles to help IPWSO continue its work across the world – we thank you so much for your graciousness and generosity.  You can check on the candles by going to our Light A Candle for IPWSO page.

 

One of IPWSO's three information packages:  General Awareness, Medical Awareness, and Crisis Intervention

Invoices for membership fees 2012 have been sent out, and the following member countries are now subscribed for this year:

• Australia
• Finland
• France
• Germany
• New Zealand
• Norway
• Slovakia
• USA