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Note: Links to external websites may have changed
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Grant
for my work!
Please help Jane Baker! |
24-12-2003 |
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 Attentive
readers will have noticed that it's been a while since
the last update - I've just returned from a trip to
wintry Copenhagen, to receive a grant. Awarded for my
dedication to providing information and support to GBS-sufferers
worldwide, it is an unexpected honour.
The money has gone to the Danish GBS support group,
and will fund the many projects that were shelved due
to lack of funds.
Jane Baker needs help! Her brother has
severe GBS and her family is desperate for information
- check out 'Readers comments'.
If you or somebody you know has (had) severe GBS, please
send in your case history! Jane, and others looking
for information on the issue badly need the information
and inspiration your story can provide.
Have a wonderful christmas and an amazing
New Year! May 2004 bring good health to you and the
people you hold dear.
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New
treatment guidelines.
Bonnie and Kenny Kistler need support! |
26-11-2003 |
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The
American Academy of Neurology has recently presented new
guidelines for the treatment of Guillain-Barré
syndrome. Read about the implications, see 'Healthcare
Professionals'.
Bonnies husband is suffering through a variety of post-GBS
residuals, and badly needs information and support. Read
their account of life during and after GBS under 'Case
Histories'. |
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Lyndsi's
recovery.
Thinking about influenza vaccinations? |
18-11-2003 |
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Some
months ago, little Lyndsi was recovering from GBS and
her case history was shared here. Her mom, Pam has just
sent me a very positive update, check 'Case histories'!
The sniffles are going around over most of the world.
Are you considering an influenza jab? Make an informed
decision about your health - check 'Links' > 'Vaccinations'
for information about GBS and vaccinations, speak to your
physician about the pros and cons. |
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| Did
Roosevelt have GBS? |
04-11-2003 |
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| Thanks
to George and Ken for this fortnights headline: Researchers
in Texas suggest that American president Roosevelt may
have suffered from GBS, not polio. Read more!
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| "Things
can only get better after GBS" |
14-10-2003 |
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| Tom
Hawkins has very kindly sent me another humourous account
of life after GBS. As he writes, despite having recently
broken an ankle and thus in the process of making a rather
painful and difficult recovery, "There was life before
GBS but it has never been as enjoyable as now". Thanks
Tom, best wishes for your recovery, and please do write
in again soon! Readers, enjoy! See 'Case Histories'. |
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Third
annual Lehigh Valley Peripheral Neuropathy Conference
to be held in Fogelsville on sept 06. Speakers (all doctors),
will speak on
- peripheral neuropathy (PN)
- personal experience with peripheral neuropathy (PN),
including advice for handling relationships and intimacy.
- the integration of traditional and non-traditional therapies,
as well as diabetic neuropathy. Read more
.... |
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| Jenny
Murray awarded Queen's Medal |
12-08-2003 |
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 Jenny
Murray started up the GBS support organisation in New
Zealand after her sister contracted GBS. Jenny has helped
hundreds of people in New Zealand and elsewhere, and has
just been honoured for her work with the Queen's Service
Medal for Community Services. Congratulations, and keep
up the good work!! Read about how Jenny started up a support
group, and read her sister's case history, as described
by Jenny's niece. See 'Case Histories'. |
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Mary
had GBS, Bells Palsy, was pregnant -
and in a car crash! |
31-07-2003 |
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| Mary's
story makes you wonder how she survived the onslaught
of all these factors simultaneously! See 'Case Histories'. |
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| A
Psychologist’s Rehabilitation Memoir |
15-07-2003 |
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"
My kids have called me 'Mr. Schedule Man' on more than
one occasion. However, I didn’t prepare to be paralyzed
only 48 hours after my feet tingled and my legs felt too
heavy to lift..."
Read Prof. Thomas V. McGovern's story - click on 'Case
Histories'. |
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| Van
Brown has recovered from GBS! |
01-07-2003 |
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| 3
years after being attacked by GBS, Van Brown has successfully
recovered. Read his honest and very inspiring account
of his traumatic illness. Van offers inspiration and advice
on what got him through GBS, see 'Case Histories'. |
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| Robyn
had GBS & Bells Palsy |
20-06-2003 |
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Robyn
is among those who still suffer a great deal from residual
symptoms. Read her account of what it was like to suffer
from both GBS as well as Bells Palsy - see 'Case Histories'.
Send in your tips and experiences to the 'Post-GBS
residual' page! |
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| Reader
sends in cool links! |
10-06-2003 |
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A
reader, Suzanne, sent in a couple of links. One is to
a poem on GBS. I thought it would make a refreshing change
- see 'Readers comments'!
The other link is about David Lim who was determined to
climb again, and has successfully pursued his hobby after
a bout with GBS. Check out 'Case histories'. Thanks, Suzanne! |
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| Zoe:
My dad recovered from GBS! |
02-06-2003 |
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| Zoe
was only 10 when her dad suffered through GBS. The family
was called in several times when it seemed he might die....
Today, Zoe's dad is fine! See 'Case histories'. |
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| Mattia:
a child with GBS |
26-05-2003 |
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| Mattia
is a child whose life has been completely altered by GBS.
This story is written by his father, Giuseppe. See 'Case
histories'. |
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| Post-GBS
residual symptoms |
19-05-2003 |
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Do
you suffer from post-GBS residual symptoms (tingling,
pain, exhaustion, etc)? Is your medication helping, do
you have tips on how to deal with these symptoms? Check
out "Post-GBS residuals"
- a patient-to-patient collection of information.
GBS/CIDP & Intimacy : share
tips and experiences here. |
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| New
links, new books |
12-05-2003 |
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| Many
people have sent in links or have suggested new books
written by people who have experienced GBS. These have
been added to the list here, check 'Links'. Thanks to
all the contributors! |
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| Linda
Schaedle, on GBS |
06-05-2003 |
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I was inspired by Linda's description
of her life and successful career, despite the life-altering
experiences of GBS and a relapse. Thank you, Linda,
for sharing this inspiring and informative account.
See 'Case histories'.
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| "No
Laughing Matter" |
29-04-2003 |
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This week I have the pleasure of bringing
you Tom Hawkins' amusing story of his experiences as
a GBS patient. See 'Case histories'. Thank you for the
good laugh, Tom.
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| Geri
had GBS 20 years ago |
20-04-2003 |
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Geri describes how difficult it was to
suffer from a rare disease 20 years ago. She now uses
braces but still suffers from pain. See 'Case histories'.
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| Lyndsi
Graf had GBS as a 20 month-old baby |
26-03-2003 |
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Pam Graf writes about her baby Lyndsi's
encounter with GBS. Lyndsi recovered quite quickly and
is doing well today, less than 6 months later. See 'Case
histories'.
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Bill's
story: I had GBS 30 years ago.
Peter: still recovering. |
12-03-2003 |
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Bill
recounts what it was like to suffer from a strange illness
30 years ago. As with many other GBS patients then and
today, he was suspected of being a kook but fought to
recover. See 'Case histories'.
Peter Nørlund did not recover fully from GBS. 10
years later, he relates how he copes with the aftermath
of a disease that crushed his future and his dreams. A
must-read. See 'Case histories'. |
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Launching
the 'Research & trials' section!
GBS chatroom now available.
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06-03-2003 |
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'Research & trials' is an area
of interest to many with GBS. Read about the findings
of researchers all over the globe who're studying the
syndrome and working towards a cure. Clinical trials
are necessary to improve treatment, check which trials
are recruiting patients and if you qualify! See 'Research
& trials'.
The GBS chatroom is now also available to non-Danish
visitors. Chat with other patients, exchange experiences
and tips. See 'Chat'.
'Links' has been updated with more books on GBS. Have
you read these? Your feedback will help other patients.
Alex' story has just been updated. This teenager has
recovered beautifully from suspected MFS, read about
his progress under 'Case histories'.
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| GBS-UKs
annual GBS conference. |
01-03-2003 |
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GBS-UK has scheduled its annual GBS conference
for 12/4-2003. Speakers include Prof. R.A. Hughes, renowned
for his work in GBS/CIDP. [Details].
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Simon's
experience with GBS/CIDP.
Intimacy and GBS/CIDP/... |
24-02-2003 |
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Simon suffered from GBS/CIDP as a 12-year
old, apparently as a result of a vaccination. Read about
the terror he suffered due to the motor symptoms, and
how treatment finally led to recovery. See 'Case histories'.
Has GBS/CIDP/MFS/... caused any changes in your intimate
love-life? Let's pool our information and experiences,
and help make a difference - write in! [more]
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| Let's
talk about intimacy |
18-02-2003 |
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This year, let's highlight poorly-described
problem areas that reduce the quality of life of GBS/CIDP
sufferers. Let's begin with an area of significant impact:
"GBS and Intimacy". Email
about the problems you've experienced, solutions you'd
like to share, aspects that deserve more awareness,
etc.
Please note that this is a patient-to-patient (P2P)
resource, and my role is solely limited to publishing
emails received. I will respect requests for anonymity,
but your name, address and email address HAS to be sent
in to ensure the email's veracity, or else your email
gets tossed. No porn. [More]
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| Desperately
seeking Sponsor/donations! |
12-02-2003 |
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Would you like even more information,
more reader-to-reader contact, perhaps even a Q&A
forum with a health care provider? I'd like to offer
these without having to resort to annoying banners and
popups, and I need YOUR help. Running this website has
real costs involved, and your donations
to support this free support service is appreciated.
Every dollar, pound, yen counts!
Please note that donations are not tax deductible.
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| GBS-NZ
conference |
08-02-2003 |
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The New Zealand support group is holding
its first international conference 25-27.04.2003. Key
Speaker is Dr. Gareth Parry, known for his work in GBS.
Registration deadline: 20.02.2003.
Please contact Jenny
Murray for information and registration.
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| Wieghorst
-more! |
04-02-2003 |
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Right on the heels of the news about Wieghorst
being ill (see below), came an email pointing out that
he was made captain of the Danish team! So - if you
are a GBS patient desperately seeking a story with a
positive outcome, check out the links here and in the
archives, to articles relating the course of his illness
and his victory over GBS!
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| Wieghorst
ill. |
30-01-2003 |
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Danish fans are in a tizzy over reports
that Morten Wieghorst and a couple of teammates are
victims of the Thai equivalent of Delhi-belly. Yes,
GBS may be triggered by diarrhoea caused by Campylobacter,
and yes, recurrences,
although rare, do occur. Trainer Morten Olsen says,
however, that this stomach infection is not food-related,
and blames jetlag and the heat.
I keep receiving links to old articles relating to Wieghorsts
GBS, even though he is now successfully recovered.
I include them here, hoping they will inspire other
patients to fight for recovery. More.
Note the incorrect references to "brain bug"
- GBS does not affect the brain.
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Babbels
comeback.
GBS Granny backs campaign to buy equipment. |
24-01-2003 |
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These links were sent in by Ken Sawyer,
some time ago. Thanks, Ken. Liverpool player Marcus
Babbel has been recuperating from GBS for the last 15
months. Babbel's
comeback finally occurred in November 2002. Read
about his progress in the archive here.
English Grandmother recovering from GBS backs hospital
trust's campaign to buy expensive physiotherapy equipment.
Read more.
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Angela
May's case history.
Website redesign.
Introducing All about GBS's search engine!
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15-01-2003 |
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Angela May made a very speedy recovery,
and would like to encourage the newly-diagnosed not
to think in terms of the worst case scenario. Read her
heartening story under "Case Histories". Thank
you for writing in, Angela!
The annual redesign of this website has just been completed.
Let me know if you find stuff that doesn't work right!
Check out the search engine found on the right side
on each page. It searches within the English area of
this website. To search within the Danish-language website,
use the engine on a Danish page.
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| Happy
New Year 2003! |
02-01-2003 |
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Two years ago, today, I launched this
website. I was driven by the fact that Scandinavia had
absolutely no source of GBS information available to
patients and their families, in an accessible language.
Little did I know what I was letting myself in for!
Many requests led to the English version, and to other
languages. Phone calls and emails from all over
the world began pouring in, requesting information and
support. Simultaneously, I found myself single-handedly
undertaking a number of other initiatives,
all with the goal of increasing the information available
and providing support. Relocating away from Denmark
several months ago made it imperative I find others
to take over my work there, and my efforts finally resulted
in the formation of GBS Support Group Denmark.
What's in store in 2003? Well, for starters,
I'll be expanding the website to include subjects not
well described in the litterature, but of great interest
to patients, their families, and health providers. So
please send me your suggestions and experiences!
To those who feel their experiences are too mundane
to share: every single case history contains invaluable
details that add to the information available here to
patients and health providers. Many aspects of GBS are
as yet unknown, and a mere detail may prove invaluable
to someone else. So write
in!
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What happened on the GBS scene in 2002
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