Help seeing a specialist for my disease
Donation protected
My name is Tyler(Gail is my mom) I was born with spinal muscular atrophy type 2, a progressive disease that causes the weakening of the muscles, this disease especially effects respiratory. A few weeks ago, after a sleep test, I was found to have very startling oxygen levels at night. It is vital for me to visit DR Bach, university of medicine in NJ.
Dr Bach is an expert in none invasive ventilation, without the need of surgical respiratory intervention. He is world renowned doctor and is an expert at preventing respiratory failure in patients with my condition. Dr Bach's methods are not preformed anywhere else in the United States. I live in South Florida, so the trip to NJ would be very expensive, I would not be able to afford the trip as well as any medical tests that may be needed. I've estimated the total cost for travel, to be around 5,000, if any tests are required it may be more. It is also likely I will need a trilogy 100 ventilator for when I sleep, which is 15,000 alone. However any financial aid whatsoever would be extremely helpful. The appointment is on Aug 4th, i'd like to see him as soon as possible, if I miss that date I will have to wait till Sept. (Aug 4 was canceled, the apt is now Oct 1)
Here is a video of DR Bach and what he does:
You'll notice he mentions that the use of oxygen can shut off nerumuscular disease patients drive to breath, putting them in respiratory arrest. In FL, I have already been instructed by multiple doctors to use oxygen, even though it could do me harm. This is because of the lack of knowledge in my state, with my condition.
The Hazards of Oxygen
"One of the most common treatment errors for people with neuromuscular disorders is oxygen therapy, which Bach likens to "putting a Band-Aid on a cancer." He says that oxygen should never be used for people with neuromuscular conditions unless pneumonia has resulted in the need for intubation and intensive care.
Oxygen turns off the brain's drive to breathe and greatly increases the likelihood of ventilatory failure, basically allowing the blood's carbon dioxide to increase to levels that render a person unconscious and cause him to stop breathing entirely (respiratory arrest)." - Dr. John Bach
Dr Bach is an expert in none invasive ventilation, without the need of surgical respiratory intervention. He is world renowned doctor and is an expert at preventing respiratory failure in patients with my condition. Dr Bach's methods are not preformed anywhere else in the United States. I live in South Florida, so the trip to NJ would be very expensive, I would not be able to afford the trip as well as any medical tests that may be needed. I've estimated the total cost for travel, to be around 5,000, if any tests are required it may be more. It is also likely I will need a trilogy 100 ventilator for when I sleep, which is 15,000 alone. However any financial aid whatsoever would be extremely helpful. The appointment is on Aug 4th, i'd like to see him as soon as possible, if I miss that date I will have to wait till Sept. (Aug 4 was canceled, the apt is now Oct 1)
Here is a video of DR Bach and what he does:
You'll notice he mentions that the use of oxygen can shut off nerumuscular disease patients drive to breath, putting them in respiratory arrest. In FL, I have already been instructed by multiple doctors to use oxygen, even though it could do me harm. This is because of the lack of knowledge in my state, with my condition.
The Hazards of Oxygen
"One of the most common treatment errors for people with neuromuscular disorders is oxygen therapy, which Bach likens to "putting a Band-Aid on a cancer." He says that oxygen should never be used for people with neuromuscular conditions unless pneumonia has resulted in the need for intubation and intensive care.
Oxygen turns off the brain's drive to breathe and greatly increases the likelihood of ventilatory failure, basically allowing the blood's carbon dioxide to increase to levels that render a person unconscious and cause him to stop breathing entirely (respiratory arrest)." - Dr. John Bach
Organizer
Gail Thornton
Organizer
Fort Lauderdale, FL