- News 2008-

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October 2008: A recent study has proved the beneficial effects of IGIV in CIDP, and validated the long-term safety and efficacy of Gamunex as the first line and maintenance treatment for CIDP. This has led to FDA approval, and U.S. patients with CIDP finally have an FDA-approved medication to help limit peripheral nerve damage [more].

Matt Palm, promising basketball player, went from healthy to immobilised in a matter of hours, as Guillain-Barré attacked. Read about his recovery and how to turn lemons into lemonade [more]. Meanwhile, in the UK, rising talent Jamie Brooks has recovered from Guillain-Barré to the extent that he is now signed up with Oxford City [more].

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September 2008: Completely paralysed and living on life support a couple of years ago, Marco had to put his dream job on hold. He is now walking again, although with a slight limp, and is excited to be getting back to work again, saying "I’m excited to wear my police gear again; regaining full use of my legs is still a challenge; I am scared about re-integrating into the department. But I can’t help but be inspired about taking my dream off hold.” Read his interview with life coach Sheri Fisher, on the challenges of paralysis then and today [more].

Guillain-Barré syndrome is a very mysterious and complicated syndrome about which much still remains unknown. The vast majority of sufferers recover - however, recovery in some rare cases takes years to occur, or may never occur, and in very rare cases, deaths do still occur, although to a far less extent than in the past. If you feel you have symptoms, or your symptoms worsen, do NOT delay, please seek medical help at once!
Sufferer Jeff Morrison's case was "atypical" because he never recovered enough to resume an active life; he has just died. Elsewhere, Mohan Tiwari's almost 5-year old daughter died after a 36-hour bout with Guillain-Barré following a dysentery attack. I wish both families strength in their time of loss and sorrow.

Its influenza vaccination time again! Have you suffered from Guillain-Barré syndrome, or a variant, and are you now considering being vaccinated? Check your flu IQ [here].

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August 2008: Raw milk is milk that is unpasteurized, and in essence, comes straight from the udder. It has become popular among health-conscious consumers for various reasons. However, in California, the Dept of Public Health suspects at least 15 people who ingested raw milk contracted Campylobacter (food poisoning). One sufferer has developed Guillain-Barré syndrome and is in intensive care [more]. Read more about the incidence of this syndrome - what causes it, is it infectious...

A serious attack of Guillain-Barré left Erik de Haart deteriorating so quickly that his family was told he had only 40% chances of surviving until the next day. de Haart was, however, made of sterner stuff, and fought his way to recovery. Having also survived the second Bali attack, he has a strong urge to make a difference: He plans to cross Chile's brutal Atacama Desert on foot to raise at least $60,000 for the Sydney Children's Hospital [more].

In Sri Lanka, the National Blood Centre is at the heart of a major controversy as to the possible use of expired kits to get blood platelets from donors. The platelets are matched and infused to patients suffering from a variety of illnesses. The sterile kits are also used to withdraw diseased plasma from, among others, patients with Guillain Barre Syndrome. [more]

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July 2008: A lot of parents whose children have Guillain-Barré or a variant have contacted me about recovery down the road. It brings me great pleasure to bring you all this link, about a teen who has recovered from the syndrome and even won a beauty pageant! An interesting aspect of her story is that she was treated with steriods for her variant of the syndrome [more].

The American agencies CDC and FDA have once again given the vaccine Gardasil their seal of approval, as no association has been found between Guillain-Barre Syndrome and the vaccine, despite massive patient report about adverse effects [more]. Read more [here].

Did you know that food poisoning could lead to Guillain-Barré syndrome? Make sure you cook that bbq until it's done - even one drop of raw chicken meat juice is enough to cause food poisoning. For guidelines on handling raw meat, check this article [here].

Those of you who have been visiting this website over the years know that I love bringing you inspirational stories about patients who have recovered from this syndrome and gone on to do great things.
While fighting paralysis and pain, jazz pianist dreamed about creating a community engaged in arts and craft.
"The idea is to create a beautiful series of interacting events," he said. "Get the lady at church who makes apple pies, the guy who tells stories to his grandsons, the hellified poet and the beautiful musicians, plus the guy who does marvelous things with flowers and the master chef. Put these people together and let them engage -- that's the Gift Shop." Read about this wonderful idea [more]..

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May 2006: The "Focus on Pain" page has just been updated with an excellent article on effective neuropathic pain management strategies as well as one on the effect of the beliefs and preconceptions of nursing staff. Look for the symbols!

American consumers are not alone in this battle against rising drug costs. The US FDA is easing approval of more affordable generic medications, and some drug companies have programs to make their products more affordable for consumers [more].

Many patients have difficulty getting a diagnosis, because of the various ways in which this mysterious syndrome presents itself. In 1991, Canadian politician John Tory's wife was treated with chemotherapy for her symptoms, before doctors finally diagnosed her as suffering from Guillain-Barré [more].

Megan Lynn Banik, american high school senior, learned a vital life lesson when she was laid low by Guillain-Barré. In addition, the neurologists treating her piqued her fascination with nerves and the brain, and she intends to attend medical school and specialise in neurology [more]!

Dance company Marie Chouinard is visiting Singapore next month, where 'Body remix/Goldberg Variations' incorporating prosthetics will be performed ... use the search box (right) for more.

Australian Jack Taylor is confined to a wheelchair as he recovers from Guillain-Barré following a take-away meal of chicken and chips.
Experts have found a significant increase in australians contracting bacterial infections from eating contaminated chicken. The increasing numbers of potentially fatal food poisoning cases are leading to demands for an overhaul of the chicken industry [more].

I love this case history: Courtney, an eight-year old from New Zealand, got through a bout with Guillain-Barré syndrome and spoke about her experience at the 2005 GBS conference about her experience. See 'Case histories'!

The American GBS/CIDP Foundation has designated May as National GBS Awareness Month to educate Americans about this rare debilitating disorder. Local chapters across the U.S. and around the world will conduct activities to raise awareness, including educational seminars and walk-a-thons led by friends and family members of GBS patients. Please do check with your local chapter to see if they are arranging something and if they could use your help!

And finally, a survey finds that many american GBS patients forego proper medical care because they fear they will not be reimbursed by insurance programs! This is particularly dangerous because GBS has the potential to paralyse your heart if you are particularly unlucky. And spacing out treatment may result in more damage occuring within your body.

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Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk