Jul 31, 2015

Post-Polio Syndrome (PPS) - It's Not Just About Getting Older

Updated on July 28, 2015

Polio Strikes - From the 1940's to the late 1950's

Polio - that dreaded word that made every parent cringe just to think about in those days. The war was over and it was time for things to get back to normal, when like a lightening strike, the dreaded poliomeylitis virus attacked killing many and paralyzing even more. Schools closed, pools closed, stores closed, children were kept indoors not allowed to play with other children all for the fear of their contracting polio.
At the time, there was no cure or vaccine available. Many were working on a solution but so far nothing that worked. Even when Salk first tried his vaccine, it failed horribly and many of us from those days can remember. Eventually though, through much trial and error, Salk got his patent and we all got our little cubes of sugar with the vaccine and everyone decided that polio was now a thing of the past.
Now came the time for recovery. All of those young people, mostly from infancy to teens, that had been paralyzed had to learn to walk again. Many suffering from Bulbar Polio had to remain in an iron lung to survive. Polio had clearly taken it's toll on this generation of young people. In order to survive, these children had to fight and fight tremendously to regain even a slight usage of their limbs again. Many never did. Many that did, suffered withered limbs or drop feet or have spent a life in cumbersome braces.
However, as with all tragedies, there are some who survived literally unharmed. A smaller group of these polio patients suffered total paralysis at the time, but through the tenacity of physical therapy and probably the forceful nurses that angrily pushed them ahead, they walked again. Many of these grew up without any signs of polio (from the outside) with maybe the exception of one limb slightly smaller, a slight limp, stiff joints/neck and such. But walking about and motivating near normal.
What occurred with these young people is that due to their ages, the damages that the virus had caused to their motor neurons was how the virus acts in the body. Once the virus was killed, these neurons had an opportunity to grow back. The problem was that as the polio survivor aged, and pushed their tired weaker neurons more and more, they began to weaken and die off again. And what resulted? What we see and experience today - Post Polio Syndrome.

The Later Years

For those polio survivors, working so hard all those years to achieve in life, what a horrible thing for them, in the time of their lives when they should be enjoying retirement, they are suddenly stricken by the memories and pains of the past. For those that were able to regain walking, they began to lose it. For those who were able to leave their braces and/or wheelchairs, they have had to return.
When they were stricken with polio those many years ago, while much of the care they received was as though they were lepers, at least to the doctors at that time, Polio was a real disease and not just something that they learned in medical history at medical school.
Today, this courageous group of people are finding few that acknowledge Post-polio really exist, putting these people through more and more unnecessary testing and simple not listening to their patient..... and that is assuming they can even find a doctor that has even heard of Polio! Doctors are wasting precious time and money trying to diagnosis something that if they would get their heads out of the holes they are in and listen, might be able to help preserve the quality of life for the individuals.

The Problem Today

The biggest problem for these courageous individuals that fought a virus and won is that the doctors today don't know how to help them. Many refuse to acknowledge the existence of PPS and insist that the only problems these individuals are experiencing is due to normal aging. Others may say they understand or agree it is PPS, but still insist on more and more testing and delaying any assistive measures that may benefit the patient. And all of this is not even taking the total cost or frustration factor that all of this negligence causes the PPS survivor. There are a few doctors over the past few decades that have stepped out and done some research on PPS, and to those few, we salute you for doing something no one else would. It has been your diligence and research that has allowed many to remain active individuals and understand what's happening to them and to survive again. Otherwise - 
DOCTORS: Polio is a VERY real virus that still exist today, perhaps not in this country as much as others, but it is still a problem. And, as it is still a problem, doctors who feel that ignoring PPS and it will eventually and literally 'die out' are WRONG! This generation that has contracted Polio WILL DEVELOP POST-POLIO and if you don't learn about it now, what hope will they have?

To the Medical Profession - A few helpful hints

How can PPS survivors be helped? By having a medical profession that will listen to them. Here's a few pointers:
  • Have an open mind about this. If you haven't heard about PPS or don't know anything, here is your perfect opportunity to expand your knowledge. Believe me, there will be lots of PPS survivors that would love to know you are at least interested in helping them.
  • Educate yourself about Polio and Post-polio. According to studies, the amount of actual reported cases of polio from the epidemic decades ago is probably only about half of the cases as minor, non-paraylic ones may not have been reported to authorities since they might not have sought treatment.
  • Don't insult their intelligence. Polio survivors are over-achievers and quite intelligent. They know their bodies and have a very intimate relationship therefore, they listen and recognize a problem when it occurs. Take heed to their comments.
  • Listen! When a PPS survivor tells you they can't walk, believe them! Don't continue to ask them really stupid questions like "So, if you could walk, how many blocks could you walk?" REALLY!!! Then, after the survivor tells you again that they can't walk, don't continue with "Well, assuming you can walk and you walk a block, can you stop and rest for a moment then continue another block?" EXCUSE ME...were you listening at all? (And for those of you who don't think this really happens, it just happened this past week for my husband at a Neurosurgeon's interview!)
  • If they tell you they are in pain, they are. These folks aren't drug addicts or dealers just trying to get a fix. 


Thanks for taking the time to read this commentary on Post-Polio Syndrome. Like with most causes getting the word out that this is a real, debilitating problem that still exist, and will exist in the future for others, needs to be recognized and dealt with by the medical profession. 
Please take the time to scroll down and leave me a comment on your thoughts, experience or what else you would like to see added to this type of post. My husband is a Polio survivor. Therefore, I am in a caregiver role. While I don't experience the physical aspects, I see the effects, and it's painful. 

Post Polio Litaff, Association A.C _APPLAC Mexico

Jul 14, 2015

The Great U.S. Polio Panic of 2015

A new virus in the same family as polio may have caused one of the 100 mystery paralysis cases. The panic that’s resulted from this case study is missing the point: No one has polio.

When children come down with an illness that renders them temporarily paralyzed, public health officials tend to want to know why.
In 2014, there was a nationwide outbreak of a viral illness known as enterovirus D68. Part of a family of viruses that often spread during the summer, this particular outbreak caused  in thousands (possibly millions) of children across the country, in many cases quite severe. Around the same time, a number of children were afflicted with some form of paralysis, leading to concern that the two phenomena were connected. This connection was not firmly established at the time, though ultimately over 100 children were affected.
A new case study reported in the journal Emerging Infectious Diseases suggests that a different virus may have been responsible for at least one case of virally-induced paralysis. Researchers from the University of Virginia School of Medicine describe the case of a 6-year-old girl who was admitted to their medical center with weakness of her right arm in fall of last year. These symptoms had been preceded by a mild upper respiratory illness, with low fever, cough, and runny nose. Shortly before she started having trouble moving her right arm, she also had pain in the limb and under the arm.
When a sample taken from the back of her nose was analyzed, it came back positive for the enterovirus C105. Though from the same family as the virus that caused the outbreak of respiratory illnesses last year, this virus is different.
As the authors of the study note, enterovirus C105 was first detected five years ago in patients from both South America and Africa. Though it is newly discovered, thus far most identified infected patients have had some kind of respiratory illness. However, for some patients in the Congo, it was associated with fatal flaccid paralysis.
Though the symptoms some of the paralyzed patients experienced last year were polio-like, and the poliovirus is part of the same family of viruses as this new virus, it is important to note that these patients did not have polio. That illness, which caused paralysis in tens of thousands of patients in the middle of the past century (PDF), is nearing worldwide eradication thanks to a vigilant vaccination campaign. Children who came down with a paralytic illness last year weren’t infected with a vaccine-preventable illness.
In the case of the girl in Virginia, after several months she had made a near-complete recovery. Whether or not enterovirus C105 was responsible for any of the other cases of paralysis in children last year has not been established. However, there also appears to be little evidence linking the outbreak of the respiratory infection to those cases, either. Of 41 patients tested for enterovirus D68, only eight were positive, and no patients were found to have that virus in their spinal fluid. Though the authors cannot totally exclude the possibility that the D68 strain had also infected the patient they describe, they note that there was no outbreak of that illness in Virginia in 2014.
Whatever the cause of the paralytic illness in children last summer, there is no cause for anyone to be alarmed now. While it’s important to determine as best as possible what causes any illness that threatens public health, and the appearance in this country of a virus previously only identified in patients on other continents is an interesting development, it was only confirmed in one patient. While vigorously knocking on wood, I note that this summer has thus far been free of another outbreak of either form of enterovirus.
But even if enterovirus C105 never causes another illness in the United States, it’s good to be closer to an answer as to what paralyzed over 100 children last year. While the Ebola scare dominated the headlines at the time, these illnesses actually affected many more people in this country. This new case report may be an important clue in figuring out why.

Post Polio Litaff, Association A.C _APPLAC Mexico

Jul 12, 2015

Post-polio syndrome (PPS) refers to the late development of new neuromuscular symptoms

Post-polio syndrome (PPS) refers to the late development of new neuromuscular symptoms in previously stable poliomyelitis patients. 

Whether psychological disturbance plays a role in the manifestation of symptoms in these patients is unclear. We examined 22 patients fulfilling the clinical criteria for PPS with the Minnesota Multiphasic Personality Inventory-II (MMPI-II), (Beck Depression Inventory, Spielberger State-Trait Anxiety Scales, Chapman and Chapman Psychosis-Proneness Scales,)

Fatigue Scales, a neurobehavioral rating scale, and Cognitive Symptoms Self-Report Scales. The overwhelming majority of scale scores were within normal limits, and there was no indication that psychopathologic symptoms were associated with the development or severity of new muscle weakness in PPS patients.

Women with PPS had significantly more somatic complaints, but were less socially isolated than men with PPS. This study confirms that the development or severity of new muscle weakness in carefully diagnosed PPS patients is not due to, or influenced by, underlying psychopathology.
- See more at: http://postpolioproblemadediscapacidad.blogspot.mx/#sthash.ZlPBZh5F.dpuf

Post Polio Litaff, Association A.C _APPLAC Mexico

Truly Unbelievable | POLIO TIPS AND TECHNIQUES by Dr. Richard L. Bruno

Truly Unbelievable
by Dr. Richard L. Bruno
Let me tell you an unbelievable story—and I mean literally unbelievable.
Sweden, 2004—“Xepol” was described in a Karolinska Institutet press release headlined “Promising anti-inflammatory treatment for postpolio syndrome.” Sixteen polio survivors with muscle weakness were treated with Xepol, which is intravenous immunoglobulin (IVIG), a standard treatment for inflammatory diseases. “Most patients reported improvements in their physical status. However, the value of this is unclear, since this first study did not include a placebo group.” Value unclear without a placebo group? No kidding.
Sweden, 2006—A Xepol study was finally published in a medical journal. IVIG was given to 73 polio survivors and placebo to 69, then given again in three months. There was no improvement in fatigue, general muscle strength, pain, walking speed, balance or sleep quality. There were only four benefits: A “selected study muscle” increased in strength by 2%, a greater decrease in “significant pain,” a 10% increase in reported “vitality” and a 19% increase in physical activity compared to the placebo group.
Did Xepol help polio survivors? First, the placebo group had worse symptoms than the Xepol group to begin with, making it harder for them to show any benefit. Second, this was not a placebo-controlled study. IVIG subjects had noticeable and unpleasant side-effects as compared to the placebo group: 30% reported itching and rash with IV, 29% reported headache, 19% reported nausea and 10% reported feeling cold. Since as many as 30% of the Xepol subjects could have figured out that they were getting IVIG, any improvements could be due to the placebo effect.
Sweden, 2008—A press release trumpeted, “Pharmalink Reports Positive Results for Xepol,” “effective and well tolerated” in the same subjects reported in the 2006 journal article, but who were now one year post treatment. Pain, walking ability and self-report of health “all showed significant and clinically meaningful results,” the release hailed. Said Pharmalink’s managing director, “We are very excited about this data as patients in the treated group have experienced a reduction in disease symptoms after just 12 months.”
Whoa! First, the published six-month study showed no significant improvement in pain or walking ability. Second, since the new twelvemonth data hasn’t been published, so we can’t know if any of the new results produce a “significant and clinically meaningful reduction in disease symptoms.” Third, even the release said that the placebo group also reported a decrease in pain and improved walking after 12 months. Finally, the company was “very excited” because polio survivors had a reduction in symptoms Òjust 12 months” after taking Xepol?” ”Just 12 months?” Can you imagine any drug company excitedly proclaiming, “New Headache Medication Works Just 12 Months after Taking the Pill?”
North America, 2009—I received e-mails from polio survivors in the US and Mexico. Doctors were making presentations about Xepol to post-polio support groups and then asking polio survivors for donations to perform studies using Xepol.
Sweden, 2010—“Pharmalink AB, today announced agreement with Grifols for the acquisition of Xepol (R)…human immunoglobulin for the treatment of (PPS). This agreement marks a significant milestone in Pharmalink’s corporate development. Grifols will develop the PPS product opportunity. In several clinical trials lead by a team of physicians at Karolinska Institutet, immunoglobulin has shown significant and clinically meaningful results in pain, walking ability and quality of life by down-regulating the inflammatory process in the nervous system of PPS patients.”
“Significant and clinically meaningful results in pain, walking ability and quality of life?” Not in the one published study. And, none of the studies, published or not, even measured “down-regulating the inflammatory process.”
What is “significant” is the “milestone in Pharmalink’s corporate development,” having sold Xepol to a company with the cash to “develop the PPS product opportunity” without polio survivors having to fund it.
I’ve been around long enough to remember an 1995 NIH study that found that high doses of prednisone, the king of anti-inflammatory drugs, didn’t decrease PPS symptoms but did cause horrible side effects. A 2007 Norwegian study found no change in polio survivorsÕ Ò fatigue and muscle strength” three months after IVIG treatment.”
One post-polio boat sailed long ago: Inflammation does not cause PPS. That is unless you’re a corporation that “publishes” research via “very excited” press releases and happens to have a “product opportunity” that may make you a buck… or 1,500 bucks, the cost of just one Xepol treatment.
Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research. Contact him at PostPolioInfo.com

Post Polio Litaff, Association A.C _APPLAC Mexico

Jul 9, 2015

End Polio Sanofi

A polio free future

A polio-free future for all children in the world:

that’s the vision of Sanofi Pasteur, Sanofi’s vaccines division, which has partnered with international organizations to support countries that want to provide their children with a future free of polio. Nepal is the first of 73 countries to have embarked upon this route, supported by the Vaccine Alliance (Gavi).
On September 18, 2014, Nepal entered into vaccination history as the first country – supported by the Gavi (the Vaccine Alliance which helps poorest countries in access to vaccines) – to introduce the inactivated polio vaccine (IPV)1 in its immunization schedule. The goal: to enable 600,000 children born each year in Nepal to live a future without polio.
As the first vaccinations were administered in Kathmandu, the Nepalese Minister of Health and Population, Shri Khaga Raj Adhikari, accompanied by Sanofi Pasteur Chairman and CEO, Olivier Charmeil, said:
“Today we are beginning to make sure that not one of our children will have their fate broken or dreams destroyed by this disease.”
In Nepal, Mina Shrestha works with families and patients to promote vaccination
October 6 2014, the Philippines followed suit, even though the last case of polio in this country was recorded in 1993. So, why continue to vaccinate and why the choice of this vaccine? These public health policies respond to World Health Organization (WHO) recommendations, which support the plan to eradicate polio by 2018 (Eradication & Endgame Strategic Plan) in which Sanofi Pasteur is a key partner.
One of the essential elements of the eradication plan – supported by more than 400 scientists – is the introduction of at least one dose of injectable inactivated vaccine, IPV, in the normal vaccine schedule to complement and progressively replace the attenuated oral polio vaccine (OPV)2 and 3.
Polio Hero in Philippines: Guiller Tumangan
To end polio and change the course of history, Sanofi Pasteur provides the IPV vaccine to Nepal and the Philippines and will soon supply other countries in the world – over 120 countries will implement the WHO recommendation by the end of 2015. Sanofi’s vaccines division is a longtime force in the fight to prevent polio, dating to its first IPV vaccine in 1955. Sanofi Pasteur is also a partner to international organizations (Gavi, WHO, UNICEF, the Bill & Melinda Gates Foundation) in line with a vision of a world where vaccination would ensure that no one would suffer or die from a preventable disease. It is a commitment to provide quality vaccines at affordable prices, giving everyone the same opportunity to have access to the vaccination.
Photo Credit : Aiko Kawamura / Emotion Tokyo

  1. IPV injectable inactivated poliovirus vaccine
  2. OPV attenuated oral polio vaccine
  3. OPV, a simple to administer oral vaccine, has enabled a considerable decrease in polio to be achieved, but slows the circulation of the attenuated virus contained in the vaccine. IPV, injectable inactivated vaccine, enables definitive interruption of virus circulation and complete eradication
Post Polio Litaff, Association A.C _APPLAC Mexico

Jul 1, 2015

India’s Next Public Health Victory

June 24, 2015
If a stranger knocked on your door and offered you a pill, the likelihood of you taking it would be slim to none.In India, this is a common occurrence. Year after year, as part of a mass drug administration (MDA), people living in the poorest communities of the country are given medicine to treat and prevent chronic, debilitating infections known as neglected tropical diseases (NTDs). But public participation rates in MDAs continue to fall short, driven in part by low disease awareness and risk perceptions among the general public and a suspicion of government drug distribution programs.
One NTD in particular remains a major challenge for India: lymphatic filariasis (LF), also known as elephantiasis or filaria. It causes extreme pain, disabling and disfiguring all those infected. 
Nearly half of India’s population is at risk of contracting LF. However, prevention is so easy that it’s possible for India to eliminate LF within the next few years. And the government has recently stepped up its efforts to do just that, launching the largest MDA in the world to provide LF treatments to nearly 460 million people in 17 Indian states.
But medicine only works if people are willing to take it. So in October 2014, the Indian Ministry of Health & Family Welfare (MOHFW) launched a communications campaign known as "Hathipaon Mukt Bharat" (Filiaria Free India). To support the campaign, the MOHFW asked the Global Network for Neglected Tropical Diseases, an initiative of the Sabin Vaccine Institute, to develop creative communications materials.
Working with the MOHFW and other partners, we produced three television and cinema videos in 10 languages, along with radio, print, mobile phone and online spots products. We knew that not only did we have to build awareness around LF, but we also had to create a sense of shared purpose and inspiration. Audiences respond much more strongly to positive stories, so while LF is a terrible disease, we had to create an uplifting narrative. And we had to hold the audience’s attention long enough for the message to sink in.
Take a minute to watch the result:
We chose to build a story around how a group of children lead a community to discover an unexpected source of education and inspiration for LF prevention: a charismatic visitor with a severe form of the disease. The campaign emphasizes an uplifting, simple message: the pills are free and safe, and, if everyone works together and consumes their dose of the pills, India can eliminate LF.
Other key messaging highlights the irreversible nature of advanced LF and the simplicity of its prevention, with the LF patient delivering the most important message himself: this disease can happen to anyone. Social stigma is a major concern for those with LF, so we thought it was important that the man stricken with LF in the videos serve as a champion for treatment and action, rather than a helpless victim.
Lastly, given the regional language challenges, we created a musical score based on traditional Sanskrit lyrics. The lyrics translate as:
Every sign or indication leads us to the path of knowledge.
And the journey across that path of knowledge leads us to absolute truth.
Preliminary results indicate that there was broad recognition of the video spots, and participation was strong in the MDA campaign that immediately followed the outreach.
Nearly 200,000 health workers in 14 states were involved with the initial campaign drive, reaching more than 300 million people. Subsequent MDAs are being implemented in three other states in 2015. The goal now is for the MOHFW to continue placing advertising in target areas ahead of each drug distribution and to work with state governments to increase promotion and participation in the campaign.
As a testament to the campaign's innovative approach, "Hathipaon Mukt Bharat" was recently awarded a Silver Lion at the Cannes Lions International Festival of Creativity. 
Post Polio Litaff, Association A.C _APPLAC Mexico

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