Press Release by EPU/RAG
on co-operation to assist Polio Survivors
Poliomyelitis is a disease that is on the edge of eradication in the world thanks to the combined efforts of Rotary International, the World Health Organization, UNICEF, Centers for Disease Control (CDC) and the Bill & Melinda Gates Foundation (& other generous funders), together with the thousands of volunteers and health workers who have carried out the worldwide vaccination program.
Once the disease is eradicated there will still be in excess of 15 million polio Survivors worldwide who are going to need care, support and treatment for decades to come. Without, they are destined on the large part to shortened life expectancy, poverty and destitution certainly in the sub Saharan Africa, the Indian sub-continent and surrounding countries.
That is why today the Polio Survivors Rotarian Action Group and the European Polio Union are announcing that they are pooling information, and body of knowledge resources for the benefit of polio Survivors and those with Post-polio Syndrome (PPS) around the world.
John R. McFarlane, President of the EPU, said “We all acknowledge the tremendous work that has been carried by out by Rotary and its partners in bringing this virus to near extinction, and we know the final inch will be difficult but we also have to look to the future and care for all those who were unable to benefit from the vaccine for whatever reason. They need help so that they can live their lives with dignity and independence.” Ann Lee Hussey, Chair of the Polio Survivors RAG, stated “The eradication of this virus is the first part of a journey for those already affected that will last for the rest of their lives. There is much more to be done beyond eradication. We see co-operation with the EPU as the first stage in bringing the humanitarian needs of polio Survivors and those with PPS to the fore, wherever they are in the world.”
Polio Survivors & Associates is a Rotarian Action Group (RAG) dedicated to the humanitarian assistance of polio survivors. The European Polio Union is a group of polio Survivors’ support groups (21 organizations in 18 countries). It also arranges events to help and inform medical personnel and those affected by polio and Post-polio Syndrome on best practice and treatment of the condition. The two groups have a common goal – to help and improve the lives of polio Survivors and those with PPS.
NOTE TO EDITORS:
Poliomyelitis is a gastrointestinal virus that can cause flaccid paralysis. The WHO estimates for every case of such paralysis at least another 200 persons have been infected and appear asymptomatic.
Post-polio Syndrome is recognized as a condition by the WHO under 2015 ICD-10-CM Diagnosis Code G14 and defined as:
“A syndrome characterized by new neuromuscular symptoms that occur at least 15 years after clinical stability has been attained in patients with a prior history of symptomatic poliomyelitis. Clinical features include new muscular weakness and atrophy of the limbs, bulbar innervated musculature, and muscles of respiration, combined with excessive fatigue, joint pain, and reduced stamina. The process is marked by slow progression and periods of stabilization. (from ann ny acad sci 1995 may 25;753:68-80)”.
Effects of Post-polio Syndrome:
Around 20 to 40 years after their original infection by Polio, many survivors (up to 60%) are now experiencing new symptoms, which often require medical advice and treatment. This condition is known as the “Late Effects of Polio” or “Post-polio Syndrome”. A much rarer form is called “Post Polio Muscular Atrophy”.
The symptoms are not age related and usually appear in the form of: Pain in muscles and joints
Lack of strength and endurance, with increased muscle weakness and fatigue Respiratory and swallowing difficulties, often with problems relating to sleep Severe intolerance of cold
Decline in ability to carry out customary daily activities such as walking
This condition is internationally recognized (see above) and research is ongoing. While there is no known cure, much can be done to alleviate the symptoms and enable the retention of an independent life, requiring modification of life style, together with assistive devices and housing adaptations.
John R. McFarlane, President of European Polio Union Email: email@example.com
URL: www.europeanpolio.eu Twitter: @polioeurope
Facebook: www.facebook.com/europeanpoliounion Tel: +353 87 2029830 for interview/comment
Ann Lee Hussey, Chair of Polio Survivors Rotarian Action Group Email: firstname.lastname@example.org
URL: www.rotarypoliosurvivors.org Twitter: @annlee001
The European Polio Union & Polio Survivors Rotarian Action Group 7 October 2015