International Ventilator Users Network
Encyclopedia
The International Ventilator Users Network (IVUN) is a nonprofit network of mechanical ventilation
users, respiratory health professionals, and ventilatory equipment manufacturers. Its focus is on the health and independent living
of ventilator users, whether they are using assisted ventilation long-term – at home or in nursing facilities—or short-term in emergency rooms and critical care units.
Many ventilator users have neuromuscular conditions, such as respiratory polio or post-polio syndrome
, amyotrophic lateral sclerosis
(ALS), muscular dystrophy
, spinal muscular atrophy
(SMA), spinal cord injury
(SCI), or congenital central hypoventilation syndrome (CCHS). Historically, IVUN’s efforts have been primarily addressed to ventilator users with neuromuscular conditions. But people who have chronic obstructive pulmonary disease
(COPD) or obesity hypoventilation syndrome may also need to use assisted ventilation.
IVUN’s parent organization is Post-Polio Health International
(PHI). It shares that organization’s headquarters and staff in St. Louis, Missouri
, as well as its volunteer Board of Directors. IVUN’s publications, website, and volunteer advisory boards are its own, however.
personnel); and a comprehensive Home Ventilator Guide which provides technical information on home/portable ventilator equipment from manufacturers worldwide. Past issues of IVUN’s quarterly newsletter, Ventilator-Assisted Living, are also online. IVUN’s staff maintain a telephone answer-line and answer e-mail inquiries during business hours.
IVUN staff regularly attend medical meetings and international conferences on home ventilator use, and coordinate presentations by ventilator users at medical meetings such as those for the American College of Chest Physicians
(ACCP). In addition, IVUN/PHI’s periodic international conferences present many sessions relevant to ventilator users.
, on the “Timing of Noninvasive Ventilation for Patients with Amyotrophic Lateral Sclerosis.” An earlier research award (2001) went to researchers at the University of Toronto
, Canada
for a study on ”Ventilator Users' Perspectives on the Important Elements of Health-Related Quality of Life.”
, was an American Red Cross
volunteer in the polio wards of Cleveland’s City Hospital, and later in the part of that hospital (Toomey Pavilion) that became one of the 15 respiratory care and rehabilitation hospitals funded by the March of Dimes
. Those centers all across the country began to close after the polio epidemics in the United States
ended. Laurie, however, was determined to keep the respiratory polio survivors in touch with each other, and with their medical specialists.
She did this first by taking over the editorship of Toomey Pavilion’s alumni newsletter, the Toomeyville Jr. Gazette, and circulating it widely throughout the United States. Copies also went to individuals and organizations in Canada
, Great Britain
, Europe
, and Australia
. In 1960, her informal organization of volunteers was incorporated under the name Iron Lung Polio Assistance, and her newsletter grew into a magazine called the Toomey j. Gazette. In 1964, the organization changed its name to Iron Lung Polios and Multiplegics, to reflect more accurately Laurie’s cross-disability concerns. The magazine became the Rehabilitation Gazette in 1970, carrying a wide range of articles on independent living
for people with physical disabilities. Laurie soon became one of the central figures in the development of the independent living movement and in the founding of the Centers for Independent Living in the United States.
Laurie’s central concerns, however, always included ventilator users. Specifically, they concerned finding ways for ventilator users to leave hospitals and nursing homes with the support necessary for them to live active, effective lives as members of their communities. As some cross-disability organizations such as the American Coalition of Citizens with Disabilities
(ACCD) dissolved into disability-specific organizations, IVUN was formed to make sure there were publications and networks specifically for long-term ventilator users.
Mechanical ventilation
In medicine, mechanical ventilation is a method to mechanically assist or replace spontaneous breathing. This may involve a machine called a ventilator or the breathing may be assisted by a physician, respiratory therapist or other suitable person compressing a bag or set of bellows...
users, respiratory health professionals, and ventilatory equipment manufacturers. Its focus is on the health and independent living
Independent living
Independent living, as seen by its advocates, is a philosophy, a way of looking at disability and society, and a worldwide movement of people with disabilities working for self-determination, self-respect and equal opportunities...
of ventilator users, whether they are using assisted ventilation long-term – at home or in nursing facilities—or short-term in emergency rooms and critical care units.
Many ventilator users have neuromuscular conditions, such as respiratory polio or post-polio syndrome
Post-polio syndrome
Post-polio syndrome is a condition that affects approximately 25–50% of people who have previously contracted poliomyelitis—a viral infection of the nervous system—after the initial infection. Typically the symptoms appear 15–30 years after recovery from the original paralytic attack, at an age of...
, amyotrophic lateral sclerosis
Amyotrophic lateral sclerosis
Amyotrophic lateral sclerosis , also referred to as Lou Gehrig's disease, is a form of motor neuron disease caused by the degeneration of upper and lower neurons, located in the ventral horn of the spinal cord and the cortical neurons that provide their efferent input...
(ALS), muscular dystrophy
Muscular dystrophy
Muscular dystrophy is a group of muscle diseases that weaken the musculoskeletal system and hamper locomotion. Muscular dystrophies are characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue.In the 1860s, descriptions of boys who...
, spinal muscular atrophy
Spinal muscular atrophy
Spinal Muscular Atrophy is a neuromuscular disease characterized by degeneration of motor neurons, resulting in progressive muscular atrophy and weakness. The clinical spectrum of SMA ranges from early infant death to normal adult life with only mild weakness...
(SMA), spinal cord injury
Spinal cord injury
A spinal cord injury refers to any injury to the spinal cord that is caused by trauma instead of disease. Depending on where the spinal cord and nerve roots are damaged, the symptoms can vary widely, from pain to paralysis to incontinence...
(SCI), or congenital central hypoventilation syndrome (CCHS). Historically, IVUN’s efforts have been primarily addressed to ventilator users with neuromuscular conditions. But people who have chronic obstructive pulmonary disease
Chronic obstructive pulmonary disease
Chronic obstructive pulmonary disease , also known as chronic obstructive lung disease , chronic obstructive airway disease , chronic airflow limitation and chronic obstructive respiratory disease , is the co-occurrence of chronic bronchitis and emphysema, a pair of commonly co-existing diseases...
(COPD) or obesity hypoventilation syndrome may also need to use assisted ventilation.
Mission
IVUN’s mission is “to enhance the lives and independence” of ventilator users “through education, advocacy, research, and networking” among ventilator uses, respiratory health professionals, and ventilatory equipment manufacturers. Support comes from individual members, donors, and sponsors.IVUN’s parent organization is Post-Polio Health International
Post-Polio Health International
Post-Polio Health International , is a relatively new name for a non-profit organization that officially began its work in 1960. For many years it was known in medical, rehabilitation, and disability circles variously as GINI, or the International Polio Network, or the Rehabilitation Gazette...
(PHI). It shares that organization’s headquarters and staff in St. Louis, Missouri
St. Louis, Missouri
St. Louis is an independent city on the eastern border of Missouri, United States. With a population of 319,294, it was the 58th-largest U.S. city at the 2010 U.S. Census. The Greater St...
, as well as its volunteer Board of Directors. IVUN’s publications, website, and volunteer advisory boards are its own, however.
Education
IVUN publishes (both online and in print) authoritative medical information based on interaction between ventilator users and healthcare professionals. Currently, users can find online free of charge a 16-page introductory document describing the history of ventilators, the various types of ventilators, and the types of user-interfaces; a packet of documents dealing with emergency medical care for home ventilator users (checklists for users, caregivers, physicians, and Emergency medical servicesEmergency medical services
Emergency medical services are a type of emergency service dedicated to providing out-of-hospital acute medical care and/or transport to definitive care, to patients with illnesses and injuries which the patient, or the medical practitioner, believes constitutes a medical emergency...
personnel); and a comprehensive Home Ventilator Guide which provides technical information on home/portable ventilator equipment from manufacturers worldwide. Past issues of IVUN’s quarterly newsletter, Ventilator-Assisted Living, are also online. IVUN’s staff maintain a telephone answer-line and answer e-mail inquiries during business hours.
Networking
IVUN publishes, and makes available free online, the Resource Directory for Ventilator-Assisted Living, which lists respiratory health professionals who are experts in long-term assisted ventilation, ventilatory equipment manufacturers and their contact information, and organizations whose members use assisted ventilation. IVUN’s website manages an equipment exchange, a peer-to-peer advice page, and ventilator news digests.IVUN staff regularly attend medical meetings and international conferences on home ventilator use, and coordinate presentations by ventilator users at medical meetings such as those for the American College of Chest Physicians
American College of Chest Physicians
The American College of Chest Physicians is a medical organization in the United States consisting of physicians and non-physician specialists in the field of chest medicine, which includes pulmonology, thoracic surgery, and critical care medicine....
(ACCP). In addition, IVUN/PHI’s periodic international conferences present many sessions relevant to ventilator users.
Advocacy and Research
With respect to advocacy and research, IVUN’s activities are integrated with those of PHI. A recent research grant of direct relevance to ventilator users is a study, conducted in 2005 by a team at Johns Hopkins UniversityJohns Hopkins University
The Johns Hopkins University, commonly referred to as Johns Hopkins, JHU, or simply Hopkins, is a private research university based in Baltimore, Maryland, United States...
, on the “Timing of Noninvasive Ventilation for Patients with Amyotrophic Lateral Sclerosis.” An earlier research award (2001) went to researchers at the University of Toronto
University of Toronto
The University of Toronto is a public research university in Toronto, Ontario, Canada, situated on the grounds that surround Queen's Park. It was founded by royal charter in 1827 as King's College, the first institution of higher learning in Upper Canada...
, Canada
Canada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...
for a study on ”Ventilator Users' Perspectives on the Important Elements of Health-Related Quality of Life.”
History
IVUN was formally established under that name in 1987, but its roots go back to the polio epidemics of the 1940s and 1950s, when the possibility of long-term survival with mechanically assisted ventilation became a reality. Beginning in 1949, IVUN’s founder, Gini LaurieGini Laurie
Virginia Grace Wilson “Gini” Laurie was a central figure in the 20th century development, in the United States, of the independent living movement for people with disabilities...
, was an American Red Cross
American Red Cross
The American Red Cross , also known as the American National Red Cross, is a volunteer-led, humanitarian organization that provides emergency assistance, disaster relief and education inside the United States. It is the designated U.S...
volunteer in the polio wards of Cleveland’s City Hospital, and later in the part of that hospital (Toomey Pavilion) that became one of the 15 respiratory care and rehabilitation hospitals funded by the March of Dimes
March of Dimes
The March of Dimes Foundation is a United States nonprofit organization that works to improve the health of mothers and babies.-Organization:...
. Those centers all across the country began to close after the polio epidemics in the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
ended. Laurie, however, was determined to keep the respiratory polio survivors in touch with each other, and with their medical specialists.
She did this first by taking over the editorship of Toomey Pavilion’s alumni newsletter, the Toomeyville Jr. Gazette, and circulating it widely throughout the United States. Copies also went to individuals and organizations in Canada
Canada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...
, Great Britain
Great Britain
Great Britain or Britain is an island situated to the northwest of Continental Europe. It is the ninth largest island in the world, and the largest European island, as well as the largest of the British Isles...
, Europe
Europe
Europe is, by convention, one of the world's seven continents. Comprising the westernmost peninsula of Eurasia, Europe is generally 'divided' from Asia to its east by the watershed divides of the Ural and Caucasus Mountains, the Ural River, the Caspian and Black Seas, and the waterways connecting...
, and Australia
Australia
Australia , officially the Commonwealth of Australia, is a country in the Southern Hemisphere comprising the mainland of the Australian continent, the island of Tasmania, and numerous smaller islands in the Indian and Pacific Oceans. It is the world's sixth-largest country by total area...
. In 1960, her informal organization of volunteers was incorporated under the name Iron Lung Polio Assistance, and her newsletter grew into a magazine called the Toomey j. Gazette. In 1964, the organization changed its name to Iron Lung Polios and Multiplegics, to reflect more accurately Laurie’s cross-disability concerns. The magazine became the Rehabilitation Gazette in 1970, carrying a wide range of articles on independent living
Independent living
Independent living, as seen by its advocates, is a philosophy, a way of looking at disability and society, and a worldwide movement of people with disabilities working for self-determination, self-respect and equal opportunities...
for people with physical disabilities. Laurie soon became one of the central figures in the development of the independent living movement and in the founding of the Centers for Independent Living in the United States.
Laurie’s central concerns, however, always included ventilator users. Specifically, they concerned finding ways for ventilator users to leave hospitals and nursing homes with the support necessary for them to live active, effective lives as members of their communities. As some cross-disability organizations such as the American Coalition of Citizens with Disabilities
American Coalition of Citizens with Disabilities
The American Coalition of Citizens with Disabilities was, in the mid-1970s to early 1980s, a national consumer-led disability rights organization called, by nationally syndicated columnist Jack Anderson and others, “the handicapped lobby”...
(ACCD) dissolved into disability-specific organizations, IVUN was formed to make sure there were publications and networks specifically for long-term ventilator users.
See also
- http://www.post-polio.org/ Post-Polio Health International
- http://www.chestnet.org/networks/home_care/index.php American College of Chest Physicians Networks page
- mechanical ventilationMechanical ventilationIn medicine, mechanical ventilation is a method to mechanically assist or replace spontaneous breathing. This may involve a machine called a ventilator or the breathing may be assisted by a physician, respiratory therapist or other suitable person compressing a bag or set of bellows...
- medical ventilatorMedical ventilatorA medical ventilator can be defined as any machine designed to mechanically move breatheable air into and out of the lungs, to provide the mechanism of breathing for a patient who is physically unable to breathe, or breathing insufficiently....