Burden

Please use this community for general discussions about Spinal Muscular Atrophy (SMA).
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curiousgeorge
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Burden

Postby curiousgeorge » Thu Mar 17, 2016 12:12 pm

Why do you believe the benefits of following SMA protocols outweigh the 'burden'?

(Asked by a parent)

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bachjr
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Re: Burden

Postby bachjr » Thu Mar 17, 2016 12:13 pm

It is not the doctors' "business" to tell parents if the effort they put into raising their children is worth it. It is easier for doctors, who are not disabled from neuromuscular diseases themselves, to judge other people's quality of life to give themselves an excuse to not treat them rather than to learn new noninvasive strategies to treat them. Quality of life surveys are created by able-bodied people to judge the disabled not vice versa. Life satisfaction is all that counts. Ask disabled people with the same clinical situation what they think about their lives and if they would do it over again before judging other people’s quality of life if you are not disabled yourself. A child's care should depend on the parents and physicians be there to help them, not sit back and let their children die when the parents do not want this.

JB
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School


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