Aug 26, 2013

Accept the existence the Post Polio Syndrome opens opportunities for those who have PPS : Liliana Marasco


To read original whit imagines
Dis - capacidad.com 
By: Karent Mendoza Mendoza Arizmendi Arizmendi

 Mexico City - On July 28 will be held the 2nd National Symposium on Post Polio Syndrome (CAP) Approval of the existence of Post Polio Syndrome in Mexico, which aims to educate the medical, paramedical and therapists. The signs and symptoms of this disease establish an early diagnosis to enable patients to have better quality of life .
The Symposium is organized by the Post Polio Association Litaff and the Ministry of Health.Dis - capacidad.com spoke with Liliana Marasco Garrido, president and founder of the Post Polio Association Litaff who told us that the main objective is to recognize the existence of PPS in Mexico.  She said, "doctors, and people with polio, may prevent actions that may reduce our quality of life because they were not clearly recognized as SSP. "
She explained that on 28th July in Auditorium 1 of the Congress Unit of the Medical Center Siglo XXI , doctors will be trained to carry out an appropriate differential diagnosis in all health sector clinics. "This opens a range of opportunities for those who have polio and PPS. The generations of doctors who treated the polio epidemics in the 50s, 60s and early 70s , are mostly retired or have died, and the younger physicians are not familiar with the disease.  Hence the importance this Symposium and current medical updates."
Although, due to the complexity and medical terminology the symposium is addressed to practitioners.  Between 300 and 500 doctors of different specialties are expected to attend.  Liliana extends the invitation to people with polio and PPS worldwide to attend this event, as well as their families and friends.
For Liliana, the symposium represents the completion of nine years of work and a constant struggle for recognition of the syndrome and says, "It is my ultimate dream come true, I am proud to be able to meet people with polio and PSS.  I promised that one day, if God lends me life and gave me health, PSS would be classified and  certified in the world medical codes, which we have achieved with the help and interest of Health Secretary Mauricio Hernández Avila. I am finally satisfied we know that the Health Department accepts the existence and evidence of the syndrome."
    This satisfaction is even greater because this year, the World Health Organization (WHO) finally included this syndrome in Clasificación Internacional de Enfermedades within the G14 code corresponding to the central nervous system diseases . WHO states that PPS is, "an evolution of an irreversible and incurable clinical situation in relation to the progressive dysfunction of the motor units, which can not be classified as sequelae of polio."
She said, "Add to that the existence of evidence and acceptance, we already have the complete package.  Now everyone with SSP can be properly treated and their needs covered, receiving care and rehabilitation, including therapies, orthotics and prosthetic devices to enable people to lead a better quality of life."  The main themes of the Symposium are: Epidemiology and diagnosis, rehabilitation and treatment, classification in the CIF and family involvement .
And while Liliana is so excited to have fulfilled one of her dreams, nervous tension has her in bed with a strong bronchopneumonia. But that is unimportant, she says, "I am very happy because this symposium opens the possibility to its attendees to hear the latest treatments for the care of this and other mobility impairments."
Liliana Marasco thanks all those who directly and indirectly supported the realization of this great project. "I thank the physicians from the United States, partly because I know they do it for the great love they have for LITAFF, for me this was a beautiful detail that they helped me close this circle."
The main expectation of this symposium, Marasco said, "is not to lose sight of the G14 classification.  Although the Secretary of Health who conducted the symposium, he must be very attentive to the application of the G14 and can not be beyond the month of October.
The president of LITAFF has faith that the end of the symposium the medical authorities will be more interested in the care of patients with SSP.  "They need more clinics because there are not enough with only the National Rehabilitation Institute; many people from other states can not come to be treated at the DF so it is important to build clinics in other states.  They do not need to be large; doctors only need to be prepared.  Perhaps there is no polio in Mexico at this time, but SSP and those who have it, need attention."
Liliana said, "This event is the result of a great effort and I can only thank God, my family, my loved ones and all the institutions that worked with me."
The symposium is sponsored by the Ministry of Health and the National Council for Persons with Disabilities (CONADIS). The Symposium is at: Av Cuahutemoc No. 300 , Col. Doctores, July 28 from 8:00                 http://www.dis-capacidad.com/page/details.php?id=1006 
AGENDA : http://conadis.salud.gob.mx/descargas/pdf/100705-Programa-Simposio-Postpolio-v2.pdf
Asociación Post Polio Litaff, A.C_APPLAC
Liliana Marasco Garrido Founder President
 Post Polio Survivor
Correo litaffac@prodigy.net.mx
Web  www.postpoliolitaf.org  

http://postpoliosinmex.blogspot.com

Aug 22, 2013

Intravenous Immune Globulin (IVIg) Therapy

For Neurologic Diseases

  1. Marinos C. Dalakas, MD
+Author Affiliations
  1. From the National Institutes of Health, Bethesda, Maryland. For the current author address, see end
     of text. For definitions of terms used in this article, see glossary at end of text. Acknowledgment: 
    The author thanks B.J. Hessie for skillful editing. Requests for Reprints: Marinos
     C. Dalakas, MD, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Building 10, 
    Room 4N248, 10 Center Drive, MSC 1382, Bethesda, MD 20892-1382.

    Abstract

    High-dose intravenous immune globulin (IVIg) has emerged as an important therapy for various neurologic diseases.
     Different interpretations of clinical trial results; the expected benefit of IVIg compared with that of alternate therapies;
     and issues about IVIg's safety, cost, and mechanisms of action have raised concern and uncertainty among practitioners.
     To clarify these areas, this paper examines the clinical, serologic, and immunologic data on more than 110 patients with various autoimmune neurologic
     diseases who received IVIg during the past 6 years at the National Institute of Neurological Disorders and Stroke. It also reviews work by other investigators 
    on the efficacy, risks, benefits, and mechanisms of the action of IVIg in these diseases.
    In controlled clinical trials, IVIg has been effective in treating the Guillain-Barre syndrome, multifocal motor neuropathy,
     chronic inflammatory demyelinating polyneuropathy, and dermatomyositis. 
    In other controlled or open-label trials and case reports, IVIg produced improvement in several patients with the Lambert-Eaton myasthenic 
    syndrome and myasthenia gravis but had a variable, mild, or unsubstantiated benefit in some patients with inclusion-body myositis, paraproteinemic
     IgM demyelinating polyneuropathy, certain intractable childhood epilepsies, polymyositis, multiple sclerosis, optic neuritis,
     and the stiff-man syndrome. The primary adverse reaction was headache; aseptic meningitis, skin reactions, thromboembolic events, and 
    renal tubular necrosis occurred rarely. The most relevant immunomodulatory actions of IVIg, operating alone or in combination, are inhibition of 
    complement deposition, neutralization of cytokines, modulation of Fc-receptor-mediated phagocytosis, and down-regulation of autoantibody production. 
    Therapy with IVIg is effective for certain autoimmune neurologic diseases, but its spectrum of efficacy has not been fully established. Additional controlled clinical trials are needed.
    By the American College of Physicians

    Intravenous Immunoglobulin in Autoimmune Neuromuscular Diseases

    1. Marinos C. Dalakas, MD
    [+] Author Affiliations
    1. Author Affiliations: Neuromuscular Diseases Section, National Institutes of Health, National Institute of Neurological Disorders and Stroke, Bethesda, Md.

    ABSTRACT

    Context  Intravenous immunoglobulin (IVIG) enhances immune homeostasis by modulating expression and function of Fc 
    receptors, interfering with activation of complement and production of cytokines, providing anti-idiotypic antibodies, and 
    affecting the activation and effector functions of T and B cells. These mechanisms may explain the effectiveness
     of IVIG in autoimmune neuromuscular disorders.
    Objective  To systematically review the current status of the treatment of autoimmune neuromuscular 
    diseases with IVIG, with emphasis on controlled trials.
    Data Sources  Peer-reviewed publications identified through MEDLINE (1966-2003), EMBASE (1974-2003), and
     references from bibliographies of pertinent articles. Each autoimmune neuromuscular disease term was searched 
    in combination with the term intravenous immunoglobulin.
    Study Selection and Data Extraction  Criteria for selection of studies included controlled study design, English
     language, and clinical pertinence. Data quality was based on venue of publication and relevance to clinical care.
    Data Synthesis  Outcomes of controlled trials indicate that IVIG at a total dose of 2 g/kg is effective as first-line
     therapy in Guillain-Barré syndrome, chronic inflammatory demyelinating polyneuropathy, and multifocal motor 
    neuropathy and as second-line therapy in stiff-person syndrome, dermatomyositis, myasthenia gravis, and 
    Lambert-Eaton myasthenic syndrome. In other controlled studies, IVIG produced a modest, variable, and transient
     but not statistically significant benefit in patients with inclusion body myositis and paraproteinemic 
    anti–myelin-associated glycoprotein antibody demyelinating polyneuropathy. Intravenous immunoglobulin is
     not effective in patients with multiple sclerosis who have established weakness or optic neuritis. 
    In myasthenia gravis, it should be reserved for difficult cases or before thymectomy in lieu of plasma exchange.
    Conclusion  Intravenous immunoglobulin is effective in many autoimmune neurologic diseases, but its 
    spectrum of efficacy, especially as first-line therapy, and the appropriate dose for long-term maintenance 
    therapy are not fully established. Further controlled studies of IVIG, combined with a dose-finding 
    effect, pharmacoeconomics, and quality-of-life assessments, are warranted to improve the evidence base


    Polio Manifest October 24 Polio World Day






    A Health Authorities and people who have had polio worldwide. As you are aware since October 1985 following the intervention of Rotary International (RI) in cooperation with the World Health Organization (WHO) and held 40 years of the founding of the United Nations (UN) was 
    established on October 24 as World Day against polio.
     This year marks the twenty-sixth day of the WORLD DAY AGAINST POLIO where, will be discussed achievements in the past year, although presented a positive balance, the proposed goals will not achieve the expected results, we know that polio is still endemic in some countries and that their have been cases of imported polio in countries where it was considered eradicated. We are aware of the great efforts made by governments, global institutions and health organizations with altruistic in providing financial resources for the elimination of this terrible disease. However, as at other times it will change again due date eradication, as the financial, political, religious, geographical and cultural will remain the major impediments to achieving the dream for so many years cherished the celebration of the end of polio! It is not what has been done, but it Much remains to be done, although there are still cases of polio at an average of 1000 per year, far too many cases for the twenty-first century medicine, we hope that this scourge will disappear forever. 

    As long as the circulation of wild poliovirus anywhere in the world, will be latent reinfection of the virus-free zones and hence the recurrence of epidemics in countries that eradicated having confidence in their people and have been declared free of wild poliovirus have lowered their rate of vaccination, allowing persisting danger of epidemics anywhere in the world. There is little to celebrate! In commemoration of World Day against polio this 2011 shortage, again, large sometimes absent from the past, survivors of the great epidemics of the last century! Those who journeyed through life even charging for fifty years or more with the aftermath left us this virus attack. 

    Overlooked by doctors and medicine that due to number of cases, and what is forgotten or never studied polio because it does not appear in the books and are doing so as a curiosity, an illness now disappeared. Those who suffer multiple corrective surgeries (many of them experimental, including the affected limb amputations), forced isolation. 
    Those who use heavy prosthesis, not rare that you see wrong and hurt our meats. Those who were stuck in artificial lungs for weeks or months. The major users of crutches, canes and wheelchairs. Those who have never gotten out of bed by the severity of its consequences and those who died from the virus attack. For this and other reasons:

    SURVIVORS OF POLIO EXPRESS: our strongest protest against the oblivion to which we have been subjected, approximately 20 million people worldwide. That persons who suffer from polio, are not stable indefinitely, as they say they never knew or not know what the disease. That past few years begins a slow and gradual deterioration of our health and the exacerbation of our sequels, why increase our disabilities, it undermines our health and diminish our quality of life. 

    The WHO and is classified and in full force this circumstance called Postpoliomyelitis Syndrome in January 2010 which states in the ICD-10 with the code G14. Forcing their compliance with all member countries. That there are multiple studies from prestigious medical institutions and universities that support without a doubt the existence of this syndrome, recent studies published in prestigious journals and multiple literature to see made available for all one that requires knowledge of the condition. That despite this, still refuses this pathological condition in most of Latin America and other European countries making patients who suffer with long journeys to hospitals and clinics cannot find answers to your discomfort or if they find apparent with the diagnosis of which is the product of his imagination denying them the care they need or sending them to work with risk to their health and physical integrity. We know that there is will and knowledge, there is little that can be do for us, on the contrary there is much that can and should do to prevent the progressive deterioration, increasing our disability and decreased quality of life. Believe it or not we are still here!

    SURVIVORS OF and those with POLIO SYNDROME Postpoliomyelitis DEMAND:
    The eradication of polio. Immediate implementation and unrestricted code G14 in all member countries of WHO in accordance with the Universal Charter of Human Rights. 
    The immediate implementation of training programs and training for all those doctors and paramedics who ignore how to diagnose and treat this condition in the countries where it is still denied. Implementation, as soon as possible, clinical multidisciplinary care to treat wide scale of problems in these patients. The overall responsible, ethical and truthful state of current disability and the prognosis for the future, for employment purposes, people with this condition. Full respect for the laws, local, national and international protection for persons with disabilities.

    SURVIVORS OF POLIO PROPOSE: Our support and active participation in actions by any authority that lead to the rapid disappearance of polio from the planet. Our full cooperation in programs that are implemented or that will be implemented to better diagnosis and treatment of our disease. Our collaboration and participation of all those serious studies which lead to better medical treatment and / or physical therapy to help improve or stabilize our quality of life. Appreciate your attention and await the answers.
    To sign the manifest here

    México a la vanguardia en el Síndrome de Post Polio

    Stop Transmission of Polio (STOP) Program



    Description: Child receiving vaccination.
    To meet the target date of polio eradication, the global partners are looking for ways to supplement human resources at the field level. The U.S. Centers for Disease Control and Prevention (  ) is therefore seeking short-term, highly qualified, health professionals to join our Stop Transmission of Polio (STOP) teams for 5½ month non-salaried field assignments (travel and per diem for food and lodging provided.)
    The global effort to eradicate polio is the largest public health initiative in history. The initiative was established in 1988 by the World Health Assembly (WHA) with the goal of eradicating polio by the year 2000 while strengthening capacity to control other major childhood diseases. At the 130th Session of the Executive Board (EB) of the World Health Assembly (WHA) in January 2012, delegates recognized the progress made to date on the three-year Program of Work on polio eradication initiative and called for additional human resources to assist with country level efforts. To fill the request for more staff for the field, the STOP program has expanded its assignments from 3 to 5 month assignments starting with the team being trained in June 2012. To obtain more information and to get updates about the progress of the initiative worldwide, please visit the Global Polio Eradication InitiativeExternal Web Site Iconwebsite.

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