Neuromuscular Disorders are characterized by the constant and progressive degeneration of muscle fibers which leads soon or later to a more or less severe weakness of the body.
Persons having Neuromuscular Disorders have to face the daily difficulties caused by the weakness of the body. The loss of the walk, the decreasing muscle strength which makes impossible even to raise a hand are two of the most dramatic consequences of this type of diseases.
Since all the body muscles are involved in this progressive loss of strength, respiratory muscles may also become unable to do their job: respiratory insufficiency is a result of this weakness.
While assistive devices like wheelchairs, lifters, PCs, etc., may help to overcome the loss of walk and the general weakness of the body, ventilators may help with respiratory insufficiency in order to avoid acute and fatal respiratory failures. Wheelchairs give movement, ventilators give life.
· many friends have died because of inadequate treatment of respiratory failures
· technology may help to prevent respiratory failures
· exchange of information and of experiences helps to rise awareness
· treatment of respiratory insufficiencies improves body conditions
· ventilators do not prevent from living a full satisfactory life
some members of the Milano Branch of Unione Italiana Lotta alla Distrofia Muscolare (Muscular Dystrophy Association – Italy) have decided to start an information service on respiratory assistance.
The service is on a voluntary basis, self-paid and self-done and at the moment gives information on mechanical ventilation, travelling, types ventilators, national and international meetings, and collects books, videos, stories of persons on ventilation, address of centres dealing with home mechanical ventilation, etc.. It is an information service from users to users.
INFORESP – information service for respiratory care
U.I.L.D.M. – Sezione di Milano
Via Lampedusa, 11/a - 20141 MILANO MI – Italy
Fax +39 02 2360084