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!
