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Simultaneously, he went into denial and refused
to give the family permission to talk to his health providers,
and we could not obtain answers to our many questions. The
situation was extremely frustrating for everybody involved.
We had no idea whether he was dying or could be cured.
I have no medical training. But a university
degree trained me in research. I began looking for answers,
and soon discovered that there was absolutely no information
available to Danish patients and their families, apart from
hard-core medical litterature in other languages!
I vowed that this lack of information was something
nobody else should have to go through. I began researching
the medical litterature on GBS, and translated my findings
into language easier for us mere mortals to understand! To
spread the information, I created a website, starting off
very modestly - 6 pages in Danish. Almost immediately, patients
began visiting the website and calling and writing in for
support, and the number of pages grew astronomically.
Barely half a year after the launch of my website,
after repeated requests from non-Danes, I realised that the
lack of information on GBS was a worldwide problem. I then
offered an English section with information, case histories
and readers comments. And other language versions are now
available thanks to on-line translation engines, that while
not perfect, enable me to serve the needs of a growing number
of international visitors, drawn here from all over the globe
by the high-quality information available.
Among these is a gentleman writing his Ph.D.
in Turkey. He was inspired, among other things, by this website,
and is working to help find out how one of the triggers that
cause GBS can be reduced. Other visitors include patients
and their families, health care providers, support groups,
etc.
Using this website
To my delight, I found that people use this website in so
many different ways. Apart from one-timers searching for information
or inspiration, some patients visit regularly, to keep in
touch with global happenings of relevance to Guillain-Barré
sufferers.
Others print pages out, mark relevant passages
and take the pages along when meeting their health professionals.
Many find these meetings very stressful, and having the information
along in black and white seems to be of great support while
explaining their sometimes diffuse needs to a busy specialist.
This is specially useful when the specialist appears unaware
of certain symptoms or treatment strategies that have been
described in the real-life case histories collection here.
Health care providers distribute prints to patients
or colleagues. Some patients print and distribute pages from
this website to their friends, acquaintances, work places,
etc. This ensures an immediate increase in knowledge of the
syndrome, and suggests several ways in which friends and family
can help - and even more important, what won't help!
Many patients find it very therapeutic to write
about their case histories and to share them with others here.
This is inspirational to other patients and their families,
and is, as described above, very informative to the health
professionals who visit this site. If your story isn't here,
please send it in!
From small beginnings ...
I was thrown into disseminating information on GBS quite casually,
but have since discovered the need for reliable and exhaustive
information. I feel privileged at being able to touch so many
lives all over the world through this website and other initiatives
launched single-handedly:
Five years after launching the website, I have
gone a long way towards fulfilling my primary goals: improving
the level of information Danish patients have access to, in
their own language, as well as creating awareness of the syndrome.
I served as Vice President for the Swedish
Support Group for GBS, as well as the Danish Liaison
to the US Guillain-Barré Syndrome Foundation International
(GBSFI). Being part of an international network of support
organisations, I could network with these support organisations.
We are able to draw on each other's experience and specialist
knowledge, and meet the needs of patients and health providers.
I founded the Guillain-Barré support
group of Denmark, where I served on the board for a while.
I have been named honorary member for life for my efforts.
Thank you, GBS-Dk! Other efforts included helping establish
a support network in Denmark. Patients and their families
can contact members for support and information, and hospital
visits can be arranged.
Setting up the first nationwide GBS rally, held in
2002, was fun - see the report here
. This should become an annual or even semiannual event at
which patients and health providers meet, to exchange information
and experience. If you would like to attend, please email
me! The next one is expected to take place in early 2005.
Due to my contacts with patients, and my knowledge
of GBS at grassroots level, I was also asked to speak to
the hospital personnel at the intensive ward of Holstebro
Hospital, Denmark, on the subject. Holstebro Hospital receives
a large number of GBS patients, and has an amazingly professional
treatment strategy in place - while simultaneously managing
to preserve 'the human touch'. I was honoured to meet with
them and hear their experiences, and it is my hope that other
hospitals and GPs will follow their example.
This website is renowned as a source
of non-specific information on GBS and its subtypes (CIDP,
MFS, AMAN, MMN, ..). Constant updates and consistently high
quality have established it as the largest Nordic source of
GBS information. New features are constantly added to improve
it. These include a chat room, to give GBS patients, their
families and health providers a way of exchanging information
and support wherever they may be in the world. A newsletter
came next, and is being sent to subscribers all over the world.
Next on the wish-list is a forum but with no funding, donations
are required. Please consider making a donation!
Unfortunately, there are still many patients
who don't find their way to the website, either because their
health providers don't think to mention the existence of the
website, or because the patient does not dare to ask for more
information out of fear of being labelled demanding. A brochure
has been designed, approved and distributed to all the hospitals
in Denmark, where it is available to patients, their families
and healthcare professionals.
The brochure is designed to increase awareness and knowledge
of GBS, to supplement the role of health providers in supplying
their patients with nonspecific information on the syndrome.
It also spreads the word about the support network.
Phew! It's a good thing I had no idea I'd be
involved in all this when I began, and looking back, I wonder
how I found time for all this in my already busy schedule!
Would you like to help?
You probably remember the gripping anxiety and fear when
you or your family member fell ill and was diagnosed with
this rare syndrome. By increasing awareness and the availability
of information, we can make it easier for others in the same
situation today.
Ex-patients and their families talking about
the syndrome with friends, neighbours, GPs, local newspapers,
local radio etc. increases community awareness of the
syndrome. We need to increase awareness in order to increase
research funding, to find a cure to this rare disorder.
Your case history and experiences, however mundane
they may seem, may be a source of great information and comfort
to patients and health professionals elsewhere. Please share
them here!
Finally - if you have found any information
here that has helped you, please consider a financial token
of appreciation. I receive no funding at all, and a donation
will increase the level of support I can offer. A forum is
on the wish-list, and would be of immense support to patients,
providing support across borders.
Help me help you. And thank you for visiting this website!
Best wishes for a good recovery,
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