Tuesday, 29 April 2014

Danish Group Homes for PWS

Contributed by Dorica Dan,  Romania

 EURORDIS, the European Organisation for Rare Diseases, has visited several Danish Group Homes for PWS last October. The visit occurred in the scope of the Joint-Action for Rare Diseases from the European Union Committee of Experts on Rare Diseases (EUCERD), where EU­RORDIS leads a work package on Specialised Social Services and Social Policies.

Dorica Dan, work package leader and President of the Romanian PWS Association, and Raquel Castro, Social Policies Manager at EURORDIS tell us what they thought of our group homes:
“We have had the chance to visit such different structures as Bofæl­lesskab Myrholmsvej (Aarhus), Grankolen (Allingåbro), Solvang and Marienlund (Fejø) and Orionvej 60 (Næstved). None of these services is exactly using the same model, yet all of them seem to be very successfully integrating their residents and helping them to be more autonomous.

We’ve realised that these houses had residents with different spec­trums of the disease and each housing facility adapted its struc­ture and activities to their residents. We’ve seen residents riding horses and we’ve seen others sitting quietly at home making puzzles and all of them looked rather satisfied.

In all houses there was an important connection with the staff, which is permanently there helping residents with their daily routine and activi­ties, making them feel supported and safe.
We’ve been told that several of these residents have tried to live on their own and have been unsuccessful in keeping their health and be­haviour at their best levels. Supporting staff has shown to be key for these residents to be able to be more autonomous while staying healthy. 
The purpose of the visits is to get to know certain Specialised Social Services for Rare Diseases in different European Countries in order to compile case study documents which can be used as advocacy tools and sources of inspiration. We consider that other countries might gain a lot from learning with the experience of the Danish PWS Group Homes and will be broadly sharing the information we’ve collected in Denmark.”

«As any parent in the world, I would like to have an independent daughter, even if she has PWS. I can say that she is well integrated into community but, until there will be a treatment to manage the food driven symp­toms caused by PWS, she may not live safely really independent. She learned and achieved things that looked impossible for anybody but the problem of the food control is extremely difficult for all of us.

Throughout our visit in Denmark, I couldn’t stop thinking which of these living arrangements would be the best for my daughter, which type could be organised in other countries (including Romania) and of course, I realized once again that the transition to independent living is solved just in a few coun­tries in Europe.

We have to learn and understand that supervision from social workers in these homes has to be accepted as a supportive reality and as part of the independent living. The “arrangements” for this change in our children’s lives will depend always on our child’s individual needs and abilities, the needs of the others living in the same home, resources avail­able in the community, our child’s dreams and hopes, etc. There is a need of sharing the experience of parents with the services providers and between the social workers, involved in this field. We have also to think that options and wishes may change over time, too.»

Dorica Dan, mother of Oana

Thursday, 17 April 2014

Tanzania, PWS, and Easter Eggs

My first exposure to a radically-different culture came when I was 20 and spent 6 weeks visiting my sister, who was at the time teaching in rural Tanzania. During the trip I reached two conclusions:

 1. The implications of material poverty and global inequality can be truly devastating for entire communities.  Not a particularly surprising conclusion to reach, I realise, but still one that no amount of advertising by aid agencies or academic learning had really convinced me of until that trip.
2.  Regardless of our material situation, we can all learn something from each other.   

The penny dropped most forcefully for me in relation to this point on a bus trip.  I use term bus loosely, as the vehicle was, in fact, a flatbed truck for which I and an implausible large number of other prospective passengers waited to board one morning.  As I stood there a Tanzanian  lady with a baby in her arms and a young child by her side silently lifted the baby into my arms and then strode ahead to secure her place on the bus.  Much later, after I had boarded the bus with her baby and held it while the journey progressed, she retrieved her infant without a word or gesture of thanks.  She hadn't asked for my assistance because she had taken it for granted.   In her culture it was the norm for childcare to be shared.  

I left Tanzania with a heightened sense of social conscience and went on to contribute to and volunteer and work for national and international charities.  I also prided myself on not getting overly hung up on consumerist aspirations (nice car, expensive clothes etc.).  

Of course it's easy to be idealistic and embrace values such as sharing and cooperation when one has few responsibilities.  When my first child (who has PWS) was born, this forced a re-evaluation of priorities.  While I could still appreciate that many people had needs far more immediate than those of my son, I wondered whether the right thing to do was in fact to save more and more of my resources to secure his long-term needs.  After all, where I live there are no guarantees about what services the state will provide for him.  Or should I direct my resources to supporting people with PWS in the country in which I live and advocating for improved services for all in my country?

My son has recently turned 10 and so I am somewhat removed from the early shock of his diagnosis.  While I try to save for my son's future and to contribute to improving services for people with PWS in my country, I remain convinced of the merits of cooperation between countries and cultures.  Given the reality that there are huge differences in the levels of resources available to people in different parts of the world, I firmly believe that those of us who are materially well-off (by global standards) should donate money to support those who are not.  I also believe that through cooperation we will all ultimately benefit.  Increased awareness about how different cultures operate will, hopefully, enable us to identify the best bits of different ways of living and to integrate some of those elements into our own societies... I know I'd like a bit of the culture that suggests that those whose childcare needs are greatest can rely on their neighbours for help.

I support IPWSO's mission because it seeks to improve the life chances of people with PWS around the world and facilitates learning among cultures.  It does this by providing free diagnosis services, information and advice where there is no expertise, and by linking peoples and communities.  If you are reading this you are probably materially better off than most people in the world.  Maybe you are intending to buy Easter eggs this year.  If so, please also consider giving the cost of a couple of Easter eggs to IPWSO to help those who have less than you do.  

Happy Easter!

(You can donate via iDonate on our webpage...)

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! 


Tuesday, 15 April 2014

Easter time musings

As a child, I used to love Easter.  There was a solemnness about it that made it different from Christmas with its joyous lead-up to an exciting occasion.  I wasn’t too sure why, but I loved the peacefulness.   Easter was quieter, much more low-key and didn’t entail a huge family dinner.  What it did have, every time without fail, were hot-cross buns and an Easter egg.  Sometimes it was a big (in my eyes) chocolate Easter egg, and sometimes it was the smaller one which only cost 6d and was wrapped in bright coloured tinfoil that you could smooth out carefully and make pretend butterflies from.  I didn’t ever like the big hollow Easter eggs as they were just that – hollow.  Empty.  And just rather dull.  But the squashy marshmallow eggs were a treat worth waiting for.

As I grew older and the Christian meaning of Easter became apparent, Easter took on a new meaning and one which took a bit of understanding as it stood for both death, and rebirth.  Chickens and rabbits became woven into the whole fabric of Easter and although it was not the season of Spring in our land, there were certainly plenty of rabbits and autumnal hatched chickens.  Easter now became something to do with the essence of life, but the eating of Easter eggs was still greatly favoured in our house.

Older still, and the reality of the Easter story and the part played by the Church meant understanding the Biblical stories of Christ and their relevance in today’s society.  Easter became a season divided into a secular society celebrating the Spring equinox and the Christian society celebrating the resurrection of Christ.  It was a time of learning the differences between secular and religious communities, and between Christianity and other religions.

But there were still Easter eggs, and hot cross buns and, now, a greater understanding of what the holiday was all about.

Then came marriage and babies.  One of the babies had Prader-Willi Syndrome and quite suddenly things like Christmas and Easter became food festivals to be treated with greatest caution.  For weeks before the Easter holiday, shops and supermarkets were gaily festooned with Easter eggs, each year getting bigger and bigger, more and more outlandish.  No longer just hollow eggs, these were filled with even more chocolate.  There were rabbits, chickens, and all sorts of figures made out of chocolate: chocolate money, chocolate cakes, birds’ nests, birds’ eggs, all variety of birds and rabbits to make shopping a nightmare.  The whole Easter egg thing became a competition about who got the most, and kids would be eating them at school long before Easter hove into view.

What was I going to do?  By now there were three children and the one with PW was the youngest.  The oldest were used to the tradition of an Easter egg – more from grandparents, aunts, uncles and so on – and now, well, was I going to have to ban this?  I had to start somewhere, so I persuaded the wider family not to give our children chocolate eggs, but if they felt they had to give something, to do it when the youngest was not around.  We introduced the idea that our chickens laid eggs and on Easter Sunday there would be one special egg – and happily they did!  Easter, like Christmas, slowly became more low-key, still celebrated, but without the emphasis on food.

Time has rolled on, and around the corner Easter is waiting again.  My daughter (the one with PW) amazed me the other day by saying she thought this year she would prefer an Easter bun rather than an Easter egg.  Not sure whether that will be a statement set in concrete, in fact I strongly suspect it is a ploy to have both, but whichever, you can be sure that if you ask her for a bite of either, she will willingly share it.  I rather think many others of our extended PW family are the same and that strong streak of generosity is in all.

Perhaps you are already buying up the Easter eggs and Easter buns, ready for the festivity?  Perhaps, this year, you would donate the cost of a few eggs to IPWSO so that we can continue to help those families in great need?  You can go to our Easter Appeal (click on "Sponsor") to donate.   We would be so grateful for your support!

Sunday, 13 April 2014

So... how many Easter Eggs will you eat?

IPWSO Awareness Week is all about chocolate - that's right, it's about how many Easter eggs will be eaten around the world this Easter.  Google tells me that over 80 million Easter eggs were eaten last year in the UK alone!  In the States the figures rise to over 700 million

When, at our monthly Skype meetings, the discussion started around fundraising this year, I swear you could hear stifled sighs from all around the world!  No one really likes fundraising or asking for money, or pushing your financial needs in front of other just causes, but these days it's what we all have to do.  Someone said, "let's do this at Easter!  Every family with a child with PWS dreads Easter and all the extra temptation!  Let's make sure everyone knows how hard it is!"

The idea caught on, and so we are concentrating on this week before Easter in order to raise awareness of IPWSO and the work we do. We rely heavily on the goodness and generosity of people like you to help us continue doing what we can to help families around the world.  For example, every month there are many email enquiries for help.  Some of this is straight-forward and we can put people in touch with others in their country, but some of it is more involved and requires searching for answers.

Prof Tony Holland
We have a fantastic Scientific Advisory Board (chaired by Professor AJ (Tony) Holland), and all these people give freely of their time which means if you have a question, we can put you in touch with specialists in all fields of PW.
Some of our PPCB Board

We have a residential advisory board, Professional Providers Caregivers Board (PPCB) who are there to give advice on residential accommodation for adults with PWS.  All of these people also give freely of their time.

We have FamCare, a board of parents and specialists who look at what families looking after an adult child with PWS need; this is more like a parent-to-parent group where the experts are the parents.

Our wonderful BIRD laboratory staff with their founders
IPWSO covers the costs of providing free diagnoses to families in countries where this would otherwise be impossible.  Last year, we did 47 free diagnoses.  Each diagnosis costs IPWSO USD190.  But, there are 47 more families who can now start to understand PWS and learn how to raise their child in the best way possible.

IPWSO helps and supports countries wanting to have their first conference, or even just a meeting of families and professionals.  In 2013 we supported meetings in Cuba and Honduras; places where parents had never met another child with PWS.

One of our many IPWSO booths
IPWSO attends international ESPE conferences were hundreds of paediatricans from around the world gather and hundreds pass by our IPWSO 'booth' and pick up information to take back to their countries with them. 

IPWSO supports 103 countries from Algeria to Yemen.  We know that there are many Western countries who don't need our direct help, but you are the only ones who can help us to help others.

So, in the tradition of Easter giving, would you, your friends, your associates, your Association, your family, help us to help others by donating the cost of a few Easter eggs?  Little Louis from Ireland has saved his pocket-money - you can see him in this video - and you can donate by clicking here.   Your donations will go towards providing free diagnoses, support for new associations, information-sharing and publications.

We are grateful to you for your generosity and support.

The IPWSO Chair and Board members