2/25/2010

Without official recognition PPS in Mexico Press Realease



With your support or comments thanks in advance

A.C Litaff, Post Polio Association (APPLAC) founded by Liliana Marasco Garrido, has 9 years of struggle in Mexico to recognize the existence of post-polio syndrome and especially to be responsive to the people who, if any, have this disorder neuromuscular degeneration, causing a high degree of motor impairment and serious effects on health.

But time and again received in response to the health authorities are only promises that the intention of taking action to create diagnostic services, adequate care and technical and technological aids.
Therefore, Marasco says that this year we have nothing to celebrate "World Day of Disabled Persons" as an important sector of people with polio have been discriminated against and excluded. The authorities know they have promised and not fulfilled. "It further claims that were denied the right to health, which is in the Mexican Constitution, but also in the Convention on the Rights of Persons with Disabilities. A relevant fact of this exclusion is that those affected are adults of working age and those with motor impairments, in the logic of social programs, "we are seen as going out already," says Liliana, and are not considered in public programs, rather they are targeted to children with disabilities and welfare to the elderly.
Without official recognition 

The problem begins when the health authorities do not recognize the existence of post-polio syndrome, despite scientific evidence that is in the U.S. and several European countries. On the Internet there is a whole network of blogs created by people with the condition. It is estimated that Mexico may have more than six thousand people. Through the efforts of Liliana Marasco, the health secretary of the Salinas presidency, Dr. Julio Frenk, facilitated the creation of the first post-polio clinic in the National Rehabilitation Institute (RNI), but few know it exists, it is not in the directory Institute, there is no information on the website. Why?, Said in an interview with Dr. Alvaro Lomeli Rivas, deputy director of rehabilitation medicine, is that"we want to ensure that the syndrome exists," and while the medical committee created in INR to investigate this issue not find what call scientific evidence, will not recognize the condition.

In 2008 the clinic saw 13 patients, but none was diagnosed with post polio syndrome, but with aftermath of polio and joint disease. Dr. Lomeli explained: "We realized that people have polio sequelae of the disease itself, but in the long term, a person can loose the strength in his limbs from the virus, is prone to muscle and bone deformity, and I submit knee, hip, and deformity of the hands. And strong dislocations can occur when they break some of the limbs. But this is post-polio syndrome, a worsening of symptoms and it is as if again they had the virus. " In this battle to achieve recognition that the syndrome does exist, the Post Polio Litaff Association is dedicated to gathering evidence, beyond the actual case of Liliana, diagnosed at a clinic in Houston and found the support and solidarity specialists such as Dr. Carlos Vallbona, director of the Clinic Herman Hesse which deals with problems of the spine and post-polio syndrome, the Medical Center Houston. It was there where he obtained an accurate diagnosis in 2000 after six years of searching for an answer to his suffering.

Without going any further, the World Health Organization in 2010 to include this syndrome in the world rankings, within the G14 codecorresponding to the central nervous system diseases. WHO states that the SPP is "an evolution of the clinical condition is irreversible and incurable, with regard to the progressive dysfunction of motor units, which can not be classified as polio sequelae.

Broken promises 
However, Liliana Marasco recognizes that in these nine years there was a breakthrough in 2006. In an interview, says of what was discussed and what the current situation in the attention to the SPP in Mexico.
What has gotten the Post Polio Association in these nine years? 
I think the first symposium on post-polio syndrome was made in 2006 with the support of the Ministry of Health. He brought the most qualified medical specialist, from Bailor College, the Medical Center in Houston. On that occasion the prevalent vaccine was introduced which is the IPO, we were immediately covered with it to tell children with double coverage to no longer be exposed to wild polio.

That thought we would go to the following in our project and other ongoing sub clinical. But since there has not been more progress, despite the work and we continue asking the authorities to listen carefully to this exists, that is scientific. It is a syndrome of primary disease called polio. That's what I do not understand.
Do people who may have post-polio syndrome today are those who had polio in the sixties? 
Not long before, from 49 onwards there was brutal outbreaks, the largest outbreak was in 52. Covered the entire United States and Mexico, thus many children were affected. The syndrome refers to the traditional side effects that are attacking you after 30 or 40 years have had the disease. It is a progressive neuromuscular disease.
Where can I meet people who have post-polio syndrome in Mexico?
With much prodding to Dr. Julio Frenk, in the past six years, and with Deputy Secretary Dr. Roberto Tapia, and Dr. Romeo Rodriguez Suarez agreed to be done to begin with a clinic at the National Institute of Rehabilitation. Currently there but it seems that until right now has not been a single person who can diagnose differentially with PPS.
In the INR told us they are confident that SPP exists in Mexico becausethey have no scientific evidence.
Yes, there is a lack of interest, not to be due, to deny what is obvious, that there is a wealth of information on all countries to support the existence of this syndrome, there's the World Health and the Pan American Health Organization, they have it classified.
What do you think they should?
There are many factors, but let's be clear, we all know that disability is an expense to the government. And people with post-polio need orthotics, physical therapy, occupational therapy, and much they cost. And if there is a program that has a budget to meet the disability of adults, since the post-polio syndrome, less.

In other countries, for example, in America does there are clinics specializing in this syndrome occurs, what attention there? 

Well, we're talking about two totally opposite worlds parameters. That the person who has post-polio is respected, first, second, the clinic has served and may one day get a diagnosis. If I had major complications were too advanced or side effects, are another highlight, Medicare, health insurance service will meet your needs, from his wheelchair or electric, medications and doctor visits, surgeries and all that required. The truth, they have a very different treatment that we have people with disabilities in Mexico.
What are the symptoms of PPS?
The symptoms are numerous and the most common is extreme tiredness that may be increasing, which decreases the physical strength to reach the chronic fatigue. Then comes the cold intolerance, you may notice that when everyone else is talking about there's a pleasant climate, and you are freezing. Another is insomnia. It is a progressive neuromuscular problem, then the entire central nervous system is compromised. There are mood swings, because the pain greatly affects the person. In many breathing problems because there were more affected lung throughout the respiratory system.
To arrive at a doctor's diagnosis was a doctor pilgrimage 

It took six years in which, from the moment I stopped walking, because I walked, attended my house, worked without problems, I was seeing all kinds of specialists and no one knew what I had. Meanwhile health was deteriorating, which is the worst. There came a very complicated moment where the whole family did not know what to do, because (the disease) increased at a rate barbaric. And the worst is not knowing what you have, the uncertainty. 
The syndrome occurs in adults of working age 

Even to have a differential diagnosis must be 10 years of stability that has not been any change. So you do not only present at 40 or 50 years old. If someone had 10 years without any change, but at 10 or 12 years you begin to notice gradual changes, loss of muscle, or strength or fatigue, and you're talking about there is a problem. But the institutions do not take into account that these people are the ones who head a household with children in school or university and have to move forward.
You will attend with conventional and complementary medicine 
Yes, since I was told the U.S. that there is nothing to offer in conventional medicine for people with PPS, I said I would use the options in Mexico that gives the herb, naturism, the ozone therapy and pharmaceuticals that help what my brain and my body does not and does not produce. We need minerals magnesium, amino acids, serotonin because we no longer produce them or its production is very low.
What is your complaint about what happens in Mexico? 
After much struggle, so much evidence of them and bring all documentation they ask us, all have in their hand, the existence of post-polio syndrome, I see that we live in discrimination and exclusion very large and we have no right to health. I wonder why we have the General Law on People with Disabilities if you really do not have rights.
Where do you come to demand these rights? 
Since the Health Ministry, Undersecretary Dr. Mauricio Hernandez has been very welcoming and friendly, but there has been no follow-up indicated that he would.
There are few doctors who knew the polio epidemics and were in "the new generations learn about the disease?
In fact in the textbooks of medical students no longer speak because polio was eradicated in Mexico. But as long as polio exists in the face of the earth can not say that ceased to exist. The one that is already eradicated is smallpox. But while there are epidemics in Afghanistan or in India, is giving us indications that the disease exists. And at any moment, unfortunately, the virus can mutate, even more so with climate change.
It should raise awareness among medical students about what is polio, so that later can understand what are the side effects in Post-poliomyelitis. Health should take this into account to have any idea how many we are, where we are, how to diagnose, INEGI statistics that do not have.
Now, you regularly need technical assistance orthodics or prosthesis type and see that next year's budget to make these technical aids decreased. Furthermore we see that in the absence of budget gives priority to the care of children with motor impairment and not the adults, especially in the productive age.What do you think of this? 
What can I say if I asked CONADIS through there these technical aids for motor impairment. I submitted to the DIF projects on the urgent need for banks exist prostheses, orthopedics, wheelchairs, supplementary aid. People of working age adults treat us like people who go out and not worth the trouble. We saw that for this government is nothing more disability in children and the elderly.
So people with PPS are excluded and discriminated against. If you go to a hospital can not respond because you do not even know what you have. The most marginalized, who have less access to health, are suffering the most.
Within the Secretariat, spoke of the prevention of health, because here's an opportunity to implement prevention. To prevent polio who had come to suffer more severe post-polio.
Liliana, what follows in this fight? 
It opens an opportunity that could be favorable for us, with the choice of master Carlos Rios as the candidate of Mexico to the UN Committee on the Convention on the Rights of Persons with Disabilities, he as a person with sequelae of polio could push the government Mexico recognizes the SPP and end this discrimination that affects us. He was going to ask.

The Polio Crusade

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Erradicación de La poliomielitis

Polio Tricisilla Adaptada

March Of Dimes Polio History

Dr. Bruno

video

movie

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A 41-year-old man developed an acute illness at the age of 9 months during which, following a viral illness with headache, he developed severe weakness and wasting of the limbs of the left side. After several months he began to recover, such that he was able to walk at the age of 2 years and later was able to run, although he was never very good at sports. He had stable function until the age of 18 when he began to notice greater than usual difficulty lifting heavy objects. By the age of 25 he was noticing progressive difficulty walking due to weakness of both legs, and he noticed that the right calf had become larger. The symptoms became more noticeable over the course of the next 10 years and ultimately both upper as well as both lower limbs had become noticeably weaker.

On examination there was wasting of the muscles of upper and lower limbs on the left, and massively hypertrophied gastrocnemius, soleus and tensor fascia late on the right. The calf circumference on the right exceeded that on the left by 10 cm (figure1). The right shoulder girdle, triceps, thenar eminence and small muscles of the hand were wasted and there was winging of both scapulae. The right quadriceps was also wasted. The wasted muscles were also weak but the hypertrophied right ankle plantar flexors had normal power. The tendon reflexes were absent in the lower limbs and present in the upper limbs, although the right triceps was reduced. The remainder of the examination was normal.

Figure 1

The patient's legs, showing massive enlargement of the right calf and wasting on the left

Questions

1
What is that nature of the acute illness in infancy?
2
What is the nature of the subsequent deterioration?
3
What investigations should be performed?
4
What is the differential diagnosis of the cause of the progressive calf hypertrophy?

Answers

QUESTION 1

An acute paralytic illness which follows symptoms of a viral infection with or without signs of meningitis is typical of poliomyelitis. Usually caused by one of the three polio viruses, it may also occur following vaccination and following infections with other enteroviruses.1 Other disorders which would cause a similar syndrome but with upper motor neurone signs would include acute vascular lesions, meningoencephalitis and acute disseminated encephalomyelitis.

QUESTION 2

A progressive functional deterioration many years after paralytic poliomyelitis is well known, although its pathogenesis is not fully understood.2 It is a diagnosis of exclusion; a careful search for alternative causes, for example, orthopaedic deformities such as osteoarthritis or worsening scoliosis, superimposed neurological disorders such as entrapment neuropathies or coincidental muscle disease or neuropathy, and general medical causes such as respiratory complications and endocrinopathies.3

QUESTION 3

Investigations revealed normal blood count and erythrocyte sedimentation rate and normal biochemistry apart from a raised creatine kinase at 330 IU/l (normal range 60–120 IU/l), which is commonly seen in cases of ongoing denervation. Electromyography showed evidence of denervation in the right APB and FDI with polyphasic motor units and complex repetitive discharges, no spontaneous activity in the left calf and large polyphasic units in the right calf consistent with chronic partial denervation. Motor and sensory conduction velocities were normal. A lumbar myelogram was normal. Magnetic resonance imaging (MRI) scan of the calves is shown in figure2.

Figure 2

Axial T1 weighted MRI scan (TR 588 ms, TE 15 ms) of the calves, showing gross muscle atrophy and replacement by adipose tissue on the left, and hypertrophy of the muscles on the right, with only minor adipose tissue deposition

QUESTION 4

The differential diagnosis of the progressive calf hypertrophy is given in the box.

Causes of calf muscle hypertrophy

Chronic partial denervation

  • radiculopathy

  • peripheral neuropathy

  • hereditary motor and sensory neuropathy

  • spinal muscular atrophy

  • following paralytic poliomyelitis

    Neuromyotonia and myokymia

  • Isaac's syndrome

  • generalised myokymia

  • neurotonia

  • continuous muscle fibre activity due to: chronic inflammatory demyelinating polyradiculopathy, Guillain Barre syndrome, myasthenia gravis, thymoma, thyrotoxicosis, thyroiditis

    Muscular dystrophies

    Myositis

    Infiltration

  • tumours

  • amyloidosis

  • cysticercosis

    Link here