Last month, I only published one item.
There just wasn't time enough in a day to write or I simply did not
have the energy to write more. Time has come to write a new article.
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| VICKY |
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| CHARISSA |
My best friend Vicky and I, were always
convinced that we belonged to the "fitter" or "better"
Ehlers-Danlos patients. We thought that our bodies were able to cope
better and do much more than reality has learned us. That we both are
worse off has been made clear to us, but more about that later!
The month January was a hectic month
for both of us, in our free time as well as in our patient foundation
time. The foundation has been inspirational to us, it has given us
the feeling that we are can still mean something in this world. We
give ourselves with full devotion and are gratefull to have the
opportunity to mean something to others and ourselves. We are
convinced that things are going in the right direction with the
foundation and that together with the whole foundation's team we will
start realising our goals.
Last month Vicky and I went to a
seminar about eHealth hosted by the EPF (European Patients Forum).
EHealth, in today's technology, is
becoming a standard, even if there is still a lot of work to perfect
it. It has become apparent that patients will need to play more and
more an active role in eHealth. Every patients has the right to know
what is written in their medical reports, even the minute details.
Even today, this right is not always exercised properly en should a
patient get their hands on a report, it will dazzle the patient with
all the medical mumble jumble.
The seminar was also more than just
eHealth, "Patient Empowerment" is just another example of
important topics that was discussed.
Patient Empowerment is a broad concept. Experience through workshops and discussions has taught us that in general
the priority is mainly place on our rights. We have the right to read
and look into our files, the right for the correct information, the
right over our own bodies. We are not saying that it is not like that,
but we have also duties: Patient Empowerment also means that we have
the duty to learn how to take care of ourselves, taking care in the
broader sense, that is. Coming up for our rights is one thing, but
performing and doing things in the right and correct manner is another.
Being assertive the right way!
We found it an educational seminar,
good speakers, workshops and discussion with people from all corners
of Europe. Everything was organized very well by EPF, beautiful hotel
room, fine food, etc. Vicky and I have enjoyed ourselves, but mostly
we learned a lot of new things and were able to broaden our networks.
Yesterday, we had an appointment at
University Hospital Ghent for research and testing to show
relationship of a dysfunctional autonomic nervous system and
Ehlers-Danlos Syndrome type III. With three we were yesterday. Karen,
Vicky and myself. We had several tests to do ... Next week we will go
back to repeat everything again and then Kelly will be present as
well. We are not going to disclose much of our research results, as
we do not want to influence other patients that still have to undergo
testing. We also want to give Inge the opportunity to present the
results as part of her doctorate. At the end of the studies, we will
disclose more.
The experience has again been extremely
confrontational and we were forced to face the reality on how
debilitating EDS could be. In our minds, we still are Super Women,
but yesterday made us realise we are NOT!
