Friday, February 17, 2012

What we do...

I think it is so interesting to see that the problems we may face with our own child, are often exactly the same as those all over the world.  Proving that we are one big family, I thought you would like to see the contacts our CE (Giorgio Fornasier) made during last year.  The list is long, and it will always be endless, but by contacting us here at IPWSO we can find someone, somewhere in the world who will be able to help...

A desperate mother from Mendoza (Argentina) with a daughter with severe obesity and behaviour problems contacted our office. We copied her message to PWSA Argentina and asked Dr. Linda Gourash to help. She was very kind, contacting the mother in Spanish and sending her articles. Also Fernando Briones, President of Madrid PWS Association, contacted this mother and offered assistance and information material in Spanish.
We assisted a mother in Brazil asking for information and sent her all files we have about PWS in Portuguese. After ESPE a doctor from Brazil contracted us and accepted to be the professional delegate for his country.. This can be a good start to try to get this important and complicated country organised again:
We received a request from our professional delegate and sent her all files included in our educational packets by email, which were duly received. We hope they are going to translate them in Bulgarian.  We assisted Dr. Violeta Iotova from Bulgaria and gave her information about GH through our Scientific Advisory Board.
It is good to know that we keep our contacts in China active and doctors representing IPWSO do appreciate the scientific articles we send them by email almost every month.  We have the Medical Alerts booklet available in Chinese in pdf format now and will probably print a few hundred for distribution at next ESPE in September 2012.
We received positive news from Colombia, as there are new mothers who seem very active in their support group or association. We sent them some articles in Spanish and put them in contact with our friends in Spain.  Our parent delegate in Colombia needed urgent assistance for a couple of cases she had and our advisors helped her promptly, together with the precious help of Madrid PWS Association as well.
Georgia is a new IPWSO member. We have been following this country for a long time and assisted with providing free blood samples through BIRD.
Hong Kong:
Hong Kong is a new IPWSO member.  We have been following a very positive contact with a family through PWSA USA. We are lucky, because both parents are also physicians so they can cover both delegates’ positions, as we have in Cuba and Mexico.
Our parent delegate in Hungary informed us that they participated to a transmission on PWS that was broadcast by national TV. Dr. Aurelia Szekely from the Romanian PWS Association accepted their invitation to give the short live report in the studio. On 23.07.2011 we received an email with a lovely group picture saying that they were very happy to inform us that they established the Hungarian Prader-Willi Association.  A doctor from Hungary came to our booth at ESPE in Glasgow and delivered 11 blood samples of 11 patients to make free methylation tests at BIRD.
PWSA USA copied our office a message they received from a lady in Teheran, who was very worried about her step-daughter’s behaviour. We sent her some articles on PWS and copied her message to our professional delegate in Teheran for further assistance. Dr. Linda Gourash assisted her directly and we mailed this mother a copy of the DVD “Food & Behaviour”.
We received a message from a doctor in Jamaica saying that she is following an 8 year old child that has many clinical features of PWS. She informed us that unfortunately the methylation test is not available in Jamaica.
We had several contacts with Japan after the earthquake and Tsunami they suffered. We expressed our solidarity and copied our delegates the many messages we received from all over the world.
We received an email from a desperate mother in Tripoli. Due to the civil war there, we could only give her the name and address of our professional delegate in Tripoli.
We had a case of a girl with PWS in Macedonia who needed urgent treatment in a rehabilitation centre in Europe. We gave her first assistance and asked for help from Norbert in Germany.  The young girl was able to go to Germany for some months and Norbert’s organisation covered all her expenses. Her mother is now our parent delegate in this country.
Following a contact with PWSA USA, we assisted a mother in Montenegro who needed a doctor speaking Serbian to follow her daughter. We had several emails and we understood each other using the Google translator. Our professional delegate in Bosnia Herzegovina was very helpful too.
We received an email from Russia from a father saying they have a confirmed diagnosis of Prader-Willi syndrome. In Russia there is not enough literature about this rare disorder so he asked us to provide as much information as possible (in English) about the treatment of diabetes mellitus II and morbid obesity for patients with PWS. We sent him all material we have in Russian and gave him the address of our professional delegate in St.Petersburg .
Saudi Arabia:
We established good contacts with a doctor who works at the Obesity Research Center of King Saud University, located in Riyadh, Saudi Arabia. In their clinic they have seen many patients with PWS. They are now starting a local support group and asked if we can guide them or give them some advice and assistance.  We also assisted Dr. Suzan Mushcab from Saudi Arabia who asked about a center in Europe that can handle hypothalamic obesity post craniopharyngioma surgery.
Through PWSA USA we got in touch with a mother from Serbia who needed information and assistance in her language. Our professional delegate in Bosnia Herzegovina Dr. Alma  
Toromanovich offered to help.

I know many of us will remember the time before email and that we actually hand-wrote letters and posted them, but I don't know where we would be today if we never had that wonderful invention of @.

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