Letter to The American Autonomic Society

[Guest guest]

Dr. Felicia Axelrod

President, American Autonomic Society

I want to particularly thank those members of the American Autonomic Society

who have shown a willingness to work collaboratively with other researchers

around the world to unravel the mysteries of Multiple System Atrophy. More

collaboration is what is so desperately needed if we are to solve this

complex problem. A great example of collaborative effort was the consensus

statement on the diagnosis of Multiple System Atrophy released in 1998.

This statement was a huge step forward in classifying this disorder and has

helped to inform doctors of the diagnostic criteria and as a result has also

helped to ensure patients and families get directed to appropriate support

resources.

In 1994 when my mother-in-law was first diagnosed with OPCA our family did

not know this disorder fell under the umbrella name Multiple System Atrophy

and we did not know where to turn for comprehensive support and information

about what to expect as this disease progressed. As well, her rather

strange symptoms of loud snoring and breathing during sleep were never

explained to us as being a part of this disorder and were not given serious

attention. Because of your work in classifying and writing about this

disorder other doctors now know that sleep apnea and respiratory stridor are

a part of this disease. I know for a fact from the many people I speak to

on the online MSA support group that this knowledge is prolonging lives!

Even one more day of quality of life for our loved ones with MSA is

precious. Your work does make a difference!

Thanks for all your hard work in that past and please continue to find more

ways to work together for the sake of all families affected with MSA.

Together there is hope!

Regards,

Pam Bower

Mount Uniacke, Nova Scotia

Canada

[Guest guest]

Dr. Felicia Axelrod

President, American Autonomic Society

I want to particularly thank those members of the American Autonomic Society

who have shown a willingness to work collaboratively with other researchers

around the world to unravel the mysteries of Multiple System Atrophy. More

collaboration is what is so desperately needed if we are to solve this

complex problem. A great example of collaborative effort was the consensus

statement on the diagnosis of Multiple System Atrophy released in 1998.

This statement was a huge step forward in classifying this disorder and has

helped to inform doctors of the diagnostic criteria and as a result has also

helped to ensure patients and families get directed to appropriate support

resources.

In 1994 when my mother-in-law was first diagnosed with OPCA our family did

not know this disorder fell under the umbrella name Multiple System Atrophy

and we did not know where to turn for comprehensive support and information

about what to expect as this disease progressed. As well, her rather

strange symptoms of loud snoring and breathing during sleep were never

explained to us as being a part of this disorder and were not given serious

attention. Because of your work in classifying and writing about this

disorder other doctors now know that sleep apnea and respiratory stridor are

a part of this disease. I know for a fact from the many people I speak to

on the online MSA support group that this knowledge is prolonging lives!

Even one more day of quality of life for our loved ones with MSA is

precious. Your work does make a difference!

Thanks for all your hard work in that past and please continue to find more

ways to work together for the sake of all families affected with MSA.

Together there is hope!

Regards,

Pam Bower

Mount Uniacke, Nova Scotia

Canada