Wednesday, November 19, 2014

"Send weighing scales and height boards"

IPWSO is proud to offer support to contacts in 103 countries.  These are doctors and parents who, like IPWSO itself, work to raise awareness of PWS and to support people with PWS.  While some of the challenges they report are shared in most or all countries, there are others that are unheard of in richer countries.  Some recent requests received from doctors and parents well illustrate this point.

1.  One doctor requested that IPWSO send him weighing scales and height boards as he simply didn't have the means to obtain these himself;

2. Many doctors requested that IPWSO continue to provide its free diagnosis service whereby IPWSO will fund the cost of genetic testing of any patients suspected to have PWS who cannot access genetic testing in their own countries.

3. One doctor requested that IPWSO send him filter paper to enable him to send blood samples to IPWSO for testing. 

4. Many doctors have requested that IPWSO advocate for the provision of growth hormone to people with PWS in their countries.

5. Doctors and parents alike have requested that IPWSO provide translations of medical guidelines and IPWSO publications.

6. Perhaps saddest of all, many doctors have requested that IPWSO continue to send them information as they hope that someday they will have patients with PWS in their countries that they can identify.  In many very large countries around the world it remains the case that there are no known cases of PWS.  Maybe you can remember what it was like to raise your child not knowing what was the matter, what made him or her so different from others.  IPWSO is working to change this.

Those of us with children who have benefited from early diagnosis that has led to positive strategies to manage the challenges of the syndrome may never pause to think of mothers in countries where none of this is a possibility and who sit and weep for the child they do not understand.  We are a huge organisation around the world and there are countries where parents have found the strength to do something, to build a PWS community where they have found strength in numbers to advocate for their children.  Others have strongly advocated for (and won the right to) growth hormone treatment.  Plenty of PW Associations have gained respect at schools by teaching teachers what their child needs, and residential services have benefited from their specialised knowledge. 

For most of us, it is almost impossible to imagine life without these supports.

For other parents, this kind of support will never happen.

One of the things IPWSO has done to acknowledge that there are families desperate for support is to initiate “FamCare”, a board which is composed of parents and professionals giving their best advice answering the questions “how do I …”  “what do I do when…”  FamCare knows what you are going through and can support and offer help.

I wish we could do more.  I wish we could say “here’s the cure… here’s what will solve the problem”, but we can’t, any more than our best scientific researchers can.



But we can help!! 

IPWSO will do its best to find the scales and height measurements needed, IPWSO will continue to offer free diagnoses where none can be found, IPWSO will get the filter papers to the doctors that need them… and IPWSO will continue to put parents in contact with other parents around the world.
By keeping our PWS community alive, by sharing not only our heartaches, but our successes, our milestones, and the crazily wonderful things that happen, we offer support, strength and understanding.  Yes, we need financial support to help doctors like the ones we’ve mentioned above, but we also need everyone in the world to understand that PWS is not a life-sentence in the way it used to be, it’s just a different way of living, of understanding how the world turns, and how we can learn from it.

IPWSO, an organisation made up of parents, scientists, professionals and people with the syndrome around the world, is united in its determination to keep learning, keep researching, keep sharing, and keeping strong in every possible way, in every country that needs us – all of us.  It’s a solidarity we are lucky to have.

We will help the doctors in countries where there is no support; we will help the parents, and we will do this knowing that you support our work in the world.  If you have a question that needs answering, if you know of a family who needs support, if you have some great stories to share with us… drop us a line!

And...thank you for being part of IPWSO!