Hospitals -
One day you may find yourself in a hospital bed, maybe in an emergency situation of some kind, or for other reasons totally unrelated to Pompe's Disease, If that should happen to you, please make sure that all the doctors, anaesthetists and nursing staff involved in your treatment and care, are aware of the fact that you may/do have weakened respiratory muscles due to Pompe’s Disease, and that anaesthesia can cause respiratory problems for you.
If you are already using a ventilator - even if only at night - make them very aware of your ventilation needs. To some extent you can, and should, play a part in your own wellbeing and health care. Unnecessary problems can, and sometimes do, arise simply through lack of communication between all parties involved.
Make sure you do your bit to help prevent that.
Doctors -
Pompe's Disease is still a very rare illness and, to many doctors, virtually unknown. You are probably the only patient with Pompe's Disease your family doctors will ever see and, sadly, they may not be up-to-date with all the progress that is being made in the Pompe's world.
Flu Shots -
With our weakened respiratory systems, flu and colds are dangerous and can kill, when they develop into a respiratory infection or pneumonia. Pompe's patients can die due to a weakened ability to deal with respiratory illnesses.
Please do ensure that you keep your flu and pneumonia shots up-to-date!
HOSPITALS, DOCTORS and FLU SHOTS
Please help to inform them!
Talk with them and make them aware!
Give them the brochures which are available from your Pompe's Support Group, copy all the news on Pompe's Disease that you have or can find, and hand it to them personally.
You can be the one to keep your doctors informed about the latest progress and happenings in the Pompe's world by keeping them up-to-date with the latest news!
It’s in your own best interests that they are well informed!
