- News archives 2005-
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Archive 2004
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Archive 2001
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December 2005: Right then, I'm back and its that time of year - time to get out the xmas tree again!
13-yr old Rosendo desperately needs financial donations to help pay for the gammaglobulin not available in Belize. Make a christmas miracle happen [more]! Other worthy causes that could use a little tax-deductible help include the Goodfellows Toy Fund, which seeks to ensure that every child has a toy under the tree on Christmas morning. Under-priviledged children like Kenneth, whose meltdown due to GBS leaves him fearful of having a similar attack ever again.
On a positive note, after 9+ years of treatment, CIDP sufferer Milt has been off IVIg since June 2004 and is now also off Imuran! So recovery is possible for CIDP sufferers. Congratulations!
Kristen writes about how lack of medical insurance made her hesitate to seek medical advice, how her heart stopped during PE, and the importance of physical therapy and a positive attitude in recovery. See 'Case histories'.Merry Christmas/Happy Holidays, and may the new year bring good health! See you again in 2006 for more news from around the world.
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November 2005: Respiratory infections are one of the triggers of Guillain-Barré syndrome: patients' immune systems are affected and remain vulnerable during the course of the syndrome including the subsequent nerve healing phase. Relapses, although uncommon, do occur in a tiny percentage of recoverees upto many years later. People with compromised immune systems should therefore avoid infections, including the flu - see the advice on how to do this in the september 2005 section.
Bearing in mind the above, the recent discovery that he H5N1 bird flu virus causes an immune system overreaction is not good.
Scientists report that massive amounts of immune system proteins, known as cytokines, rush to infected lung tissue, causing a "cytokine storm" that causes the overreaction that overwhelms the patient, sometimes fatally. A solution is to medicate H5N1 patients with drugs that depress the immune response in addition to antivirals.. [more].
Experts warn that a H5N1 pandemic is most likely to originate in Asia. So how prepared is Asia? [more]While on the subject, a reader recently sent me this love story:
"I will seek and find you . . .
I shall take you to bed and have my way with you.
I will make you ache, shake & sweat until you moan & groan.
I will make you beg for mercy, beg for me to stop.
I will exhaust you to the point that you will be relieved when I'm
finished with you.
And, when I am finished, you will be weak for days.
All my love,
The Flu
Now, Get Your Mind Out Of The Gutter And Go Get Your FLU SHOT!!!!"
Apologies if this joke upsets any of my readers, but what with the fears of bird flu and the implications an attack of the ordinary flu can have on recovering immune systems, please talk to your doctor about whether or not the shot could be beneficial for you.
Jayne wrote to me about suffering from a great deal of fatigue and weakness after being diagnosed with GBS. Read her case history..
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September-October 2005: I'm finally back after a long vacation with lots of news:
In addition to wreaking havoc, Hurricane Wilma also caused the postponement of free influenza shots. Residents of Osceola can now get their shots, hopefully other areas have received their schedules too.
In Mississauga Canada, the InKarma community association has arranged a Halloween Ball to support Crystal, a 14-year old paralysed from GBS. This is another example of how the community can help support families and individuals all year round.. [more]In the US, The FDA has reported that 5 teens developed Guillain-Barré syndrome after receiving the vaccine Menactra, which prevents a severe and deadly form of meningitis. Experts have not found a connection between the vaccine and the syndrome. Please report any possible cases of GBS after vaccination [more].
Its fall again, and the number of emails asking for advice on whether or not to take the flu vaccination are on the rise. Please consult your doctor about this, or even your neuro - he or she will have your case history at hand, and can advise you accordingly. See also 'Incidence' for more information on what to think about when considering vaccinations. A new link to be found here is Dr. Gareth Parry's "The on-going debat on flu injections".
Apart from being vaccinated, what else can one do? Read the experts recommendations on how to avoid getting influenza, but just as importantly, how to avoid passing it on to family members who may be at risk for flu complications. An experienced nurse has also written in with simple advice: "Washing your hands is not effective unless you wash your hands for 1-2 minutes. And lets be honest, who does that? A much easier solution is to rub your hands in 70% methyl alcohol and let it dry off". I'm off to the chemist ...
And finally, lets all take a deep breath and put things into perspective [more].
Hurricanes Katrina and Rita wiped out large areas of the US, including hospitals. Among the problems this has caused is treatment interruptions for GBS/CIDP patients who require IVIg at carefully spaced out intervals. Some patients don't even know if their doctors/neurologists are still alive.. or if and when treatments will be resumed. Please write in with advice!
11 years after GBS Osvaldo is still confined to a wheelchair. Driven to inspire others, he coaches diving from his wheelchair. "There is no such word as can't ... keep working hard and don't get discouraged." [more]
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July-august 2005: Suzanne lost control over her body in a matter of hours, when she was stricken with Guillain-Barré syndrome. Read about her encounter with GBS. [case histories].
Several months ago, Businessweeks cover story 'Rewiring the Body' caught my attention. It deals with 'the emerging vision of the body electric'. Increasing research into body electricity, which governs everything from transmission of thought to the rhythm of the heart, has led to the development and testing of high-tech implants. These help neurostimulation, which eliminates or alleviates some symptoms of diseases such as depression, epilepsy etc. [more]
Liddy Rohrbach wasn't going to ride out of rehab in a wheelchair. She walked - aided by a walker, but walking nonetheless, after a bout of GBS. Read about this determined survivor! [article].
Have you experienced weakness, pain or tingling after a botox injection? Check the list of botox-related problems that may be diagnosed as GBS.
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June 2005: 17-yr old Cody Unser, paralyzed from the chest down by transverse myelitis, started a research-advocacy foundation that pushes for patient-scientist meetings. She recently brought patients and international specialists together to pool resources in the fight against nerve, spinal cord and brain diseases! Cody believes that meeting patients is an important motivator for researchers more used to labs, and urges patients to utilise such opportunities to question specialists and learn about research. [more] Many GBS chapters try to bring patients, specialists and researchers together, (read the recent conference report from GBS-NZ, see May 2005 below) - check out when your local GBS chapter is holding its next meeting and take the opportunity to learn from health professionals!
The 'Focus on: GBS and intimacy' page has just been updated. Psychologist Scott Berman's article 'Dealing with Relationships and Sexuality' deserves a special mention. Scott has CIDP, and many will find his article deals with relevant issues.
Jim Cannon keeps a blog on his disorder. Read his thoughts as he fights the disorder. Writing about it is good therapy, how about keeping a blog og even just a private diary?Ken has several websites on his disorder, and works tirelessly to improve awareness of Guillain-Barré syndrome, and in particular, the variant he suffers from. Described as being a rare disease within a rare disease, PDN is yet another chronic variant that can make life very difficult for sufferers. [case histories].
Please add your voice to the petition asking for rechargeable neuro- stimulators to be reimbursed by the Centers for Medicare and Medicaid Services (CMS) in the US. Without hospital reimbursement, rechargeable neurostimulators are less likely to be offered as a pain relief option for people in chronic pain.
Additionally, the decision by CMS may influence the decisions by private payer insurances, potentially leaving the cost of the neurostimulator up to the patient. This could effectively eliminate rechargeable neurostimulators as an option for people in chronic pain! CMS needs healthcare providers, people with pain, family and friends to write or email by June 24th, 2005. [Instructions and letter template]While at work, Deputy Sheriff Jeremy O'Brien was suddenly paralysed with the same mysterious illness his brother had recovered from: Guillain-Barré syndrome. A year later, he is still paralysed. His brother and the community of Martin county are trying to raise money to cover hospital bills - read about their fundraising attempts and send in a donation! [article in local news] [fundraiser website]
Check out other case histories of patients with severe GBS at this website [case histories].Have you spent years searching for a diagnosis? If so, Discovery Health Channel may be interested in your story.. [more]
Navy veteran Harold Summers has a darned good guardian angel. Not only has he survived three wars. He also survived total paralysis caused by Guillain-Barré, although he disputes that diagnosis. He thinks his paralysis is related to chemicals, such as DDT and Agent Orange. Now 80, Summers believes the VA and bullheadedness saved his life. [more]
Thanks to Kezzi for this tip: British cases of tick-borne Lyme disease have suddenly increased. Many carry the antibody for years after a tick bite, without visible symptoms. In these people, the full-blown disease can be triggered by another illness or severe stress. Difficult to diagnose, Lyme Disease may cause a rash, joint stiffness, affect the central nervous system, causing tingling in hands and feet, facial palsy - or even death.
Anyone who goes to the countryside is at risk of infection. Be alert for ticks attaching to your skin, especially around wildlife or pets. If an infected tick bites you the risk of infection is immediate! [Learn about ticks and Lyme Disease prevention] [more about Lyme disease]
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May 2005: After having a good laugh over Jenny's email about the goings-on at the conference she helped organise a month ago in Wellington, I decided to publish it here so that more of you, sufferers and health professionals, would be inspired to attend these events. Enjoy - and don't forget to put a big X in your calender! [more..]
A string of cases of Guillain-Barré syndrome within the last year, in Beaufort County South Carolina has prompted the Department of Health and Environmental Control (DHEC) to investigate the possibility of a cluster. [more]
Parents coping with a child with GBS may find this article interesting: Two sisters cope with getting back to school and softball as one of them recovers from GBS. [article]
When teacher Karen Wall's husband was partially paralyzed from GBS, environmental science students turned up to landscape the lot around their newly completed home. As well as accomplishing a good deed, the class put landscaping lessons into practice, planting new trees, shrubs and decorative grass and even cleaning up a wooded area behind the house. In addition, outdoor wheelchair ramps were constructed by fellow teachers, who also made food for the family during her husband's illness. "It was a wonderful gift, a blessing," Wall said. [more]
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April 2005: The GBS support group in New Zealand will be holding its 2005 GBS Conference on April 22-24, in Wellington. Visiting speaker is renowned neurologist and former GBS patient Gareth Parry. Other speakers will deal with the physiotherapy and psychological aspects of GBS.
John Patterson died while suffering from two neurological diseases, CIDP and MND (Motor Neuron Disease). He used his art to help create the Dorchas Fund that supports patients whose lives are affected by either of the conditions he suffered from. Check the reviews, and find out when and where you can see the exhibition of his work. [more]
5 years ago, I created this website to increase awareness of GBS in Denmark, Europe. This website has since become renowned for the information it contains, and more importantly, it has helped create awareness of this mysterious syndrome all around the world. But more is needed before a cure can be found. Guillain-Barré is a very rare disease, which means little money and research go into it. How can you create awareness of GBS in your community? Read 'Webmaster's Forum'.
April fools joke? Under all circumstances, a refreshing idea. Heavy metal band ANTHRAX held a press conference to speak out against the US government's military use of anthrax vaccine. Systemic reaction rates to the vaccine are estimated to be as high as 85%, and include illnesses such as multiple sclerosis, Guillain-Barre syndrome and even death.
In taking a public stand, the band makes it possible, for the first time, to reach huge numbers of the general public so that they may better understand the issue. [more]According to NeuroRecovery Inc. (NRI), neurological injuries now rank as one of the top five injury types, when measured by cost. NRI anticipates carrying out human trials for chronic GBS in 2005 [more].
Breannas mom has GBS. "My mom falls down some mornings, and me and my little sister hear her crying softly and we hold each other," Breanna writes. 10-year old Breanna is writing about her mom to create awareness of GBS. She is also trying to organise a fundraiser to help pay for medical costs, but needs ideas and support [more]..
Doctors told parents of GBS patient Anna Lisa that she was brain-dead and would never recover. She proved them wrong and has since made a full recovery [more]...
Markus Babbel seems to be going from strength to strength. Having recovered from GBS, the football player appears to be a candidate for the World Cup [more]..
From one sport to another: Good news ahead for physical therapy patients fed up of exercises in a gym. A group of therapists have been looking for new ways to help patients relearn basic skills requiring hand-eye coordination, fine motor skills and balance. They find that arcade games — such as video driving games — can help patients improve useful skills! [more]--------
March 2005: Pfizer's new dryg, Lyrica, reduces the throbbing pain diabetics sometimes feel in their hands and feet. ""Lyrica dampens the excitability of nerve endings that are highly excitable," Pfizers VP says. "It's sort of like putting a blanket over high-excitable nerves." [more] A reader directed me to a forum discussing the use of Lyrica for neuropathy pain. Do any readers have experience with this medication?
CDC experts have been looking at trends in GBS following flu vaccination and found the rates are falling. The possible link between the two are still being investigated. [more]
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February 2005: Rev. Witmer spent the better part of a year completely paralyzed from Guillain-Barré syndrome. He reflected on how the grace of God comes our way in varied forms. "What should we make of a God who sometimes seems silent, and who does not always answer our prayers as we like, or deliver us from life's pain and brokenness?" Read more.
Composer of "On Eagles' Wings", Rev. Joncas, was deeply affected by GBS. The syndrome also changed how he prayed. "I can look back and see all my suffering moving toward a goal," he said. "But the question is... what about others whose pain seems to have no payoff, no goal whatsoever?" [more]2½ years after Lyndsi Graf was taken ill with GBS, she still suffers from certain residual symptoms. Her family is still dealing with the emotional impact of her illness. Lyndsi's mom Pam has sent in an update in which she describes how the family is still in the process of recovering from the shock of having a member fall ill with GBS.
A candid glimpse into the life of a caregiver - this is a must-read! See 'Case histories'.Researchers have completely sequenced the genomes of several Campylobacter strains and species, and found numerous differences and similarities between them.
Why is this important? Infection with Campylobacter (campylobacteriosis) is common. In some patients, it can be fatal, while a few others subsequently develop Guillain-Barré syndrome. By comparing genome sequences, scientists can learn much more about what makes the bacteria tick. The study enables the development of new ways to monitor and control Campylobacter in the food chain and in human infection. See 'Research & Trials'.Carol Ortis was completely paralysed by GBS and on a respirator for a year, her case complicated by poisoning in the bloodstream. During her recovery, although still in a wheelchair, she decided she was well enough to give something back: She began work as a volunteer, and is now at it from 7 a.m. to 11 p.m, coordinating aid from a wheelchair in her home. Ortis does this despite — or maybe because of — the illness that almost took her life. An inspirational article!
Ubaid suffered from GBS at 10. Progressive weakness led to intubation, forced inactivity and subsequent rehab. His mother was by his side throughout the illness, and says that he is fine today. She has now dedicated her efforts to increasing awareness of Guillain-Barré syndrome in south africa.. See 'Case histories'.
As if this story from South Africa was not enough, the strange and tragic case of Tertius Bosch has hit the news again. This south african fast bowler lost weight rapidly after his retirement from cricket in 1998 and died in 2000 aged 33. Diagnosed with GBS, it was later discovered that Bosch had disinherited his wife in his last will. His siblings had his body exhumed on suspicion that he had been poisoned. Now Bosch's body has been exhumed a second time for further forensic examination... [more]
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January 2005: Dennis has CIDP along with other health issues. Read about the way his physicians and specialists have worked out a treatment regime despite problems along the way. A glimpse into the life of a patient with a chronic variant! See 'Case histories'.
Food poisoning caused by Campylobacter can trigger off Guillain-Barré syndrome in some people. The number of Campylobacter-associated food poisonings has quadrupled in New Zealand in the past 15 years and is now five times Australia's rate and almost 10 times that of Canada. See why under 'Research & Trials'.
Due to possible drug interactions, people who take prescription medicine are strongly advised to tell their doctor of any health supplements, alternative medicines or herbal remedies they take. Recently, NZORD (New Zealand Organisation for Rare Diseases) reported that several herbal products have been recalled since 2000 due to undeclared contents of pharmaceuticals. Is the supplement you take under scrutiny? Check the list of product alerts.
Received from a handicapped post-GBS'er:
"The handicap is not in the ear. Its in the mind"
- Marlee Matlin, deaf oscarwinning actress and author.In the wake of the tsunamis in Asia, authorities fear a wave of disease among the survivors. Contaminated water and other factors could trigger Guillain-Barré syndrome among them. Those who have suffered through the syndrome know the pain and uncertainty, and would not wish the syndrome on their worst enemy. To those who have lost family, home and all their possessions, and with very little access to medical care, GBS could have fatal results. Help the support organisations make conditions better for the survivors of this horrific catastrophe!
Happy New Year to all readers, and best wishes for good health during the year ahead!
In an effort to inspire you towards better health, I have secured permission to bring you an article on post-GBS residuals written by a health professional who has himself suffered from Guillain-Barré syndrome! Check out 'Focus on Post-GBS residuals'.- - - - - - - - - - - - - -
See Archive 2004 for more!
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Archive 2004
Archive 2003
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Archive 2001
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