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Monthly Mito Expert Series

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It's getting HOT in here!

Join us May 2nd at noon eastern time for a free conference by telephone to discuss causes, symptoms, and strategies to help with heat intolerance for the child or adult with mitochondrial disease.

Apr 22, 2008 Comments: 0
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What is dysautonomia? For many, it is a one word description that explains some of the most troublesome and puzzling symptoms that adults and children with mitochondrial disease experience. The autonomic nervous system functions to moderate and allow adaption of the body to everything in our environment. The autonomic nervous system, when functioning properly, regulates the response to very basic changes such as temperature, walking, sitting, sleeping, eating, desiring, and digesting food, thirst, etc.

Apr 07, 2008 Comments: 6
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April 2008

This month, MitoAction welcomes Dr. David Holtzman to our international toll-free teleconference to discuss "dysautonomia".

Apr 01, 2008 Comments: 0
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Mitochondrial Disease Action Committee (MitoAction) Statement on Autism, Vaccines and Mitochondrial Disease www.MitoAction.org

March 21, 2008

Mar 21, 2008 Comments: 11
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Joey's smile lights up the world and the hearts of those who know him. He is a beautiful three year old boy with thick dark hair, large brown eyes, and a contagious smile.

Within hours of his birth, Joey began to have seizures which are now only partially controlled by medication. Joey was diagnosed with Mitochondrial Encephalomyopathy when he was seven months old. Mito robbed Joey of the ability to walk, sit, stand, speak and swallow but it hasn't robbed Joey of his joy for life.

Mar 13, 2008 Comments: 0
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During the last MitoAction monthly teleconference on Friday, March 7, 2008, Saad Dinno, RPh, a compounding pharmacist at Acton Pharmacy and Dr. Virginia Tawa, PharmD, discussed the ingredients which make up the mysterious "Mito Cocktail."

Mar 10, 2008 Comments: 2
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This week, a finding from November of 2007 hit the news, after being sealed by Federal Courts to protect the plaintiff's identity. The US government has conceded one vaccine-autism case in the Court of Federal Claims. Of significant interest, the vaccine is thought to have triggered the onset of an underlying mitochondrial disease.

Mar 06, 2008 Comments: 0
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As family members, patients, and caregivers affected by mitochondrial disease we hear these words often. "Use your energy wisely." We are advised to learn how to NOT exacerbate symptoms, reduce physical and emotional stressors and to elongate the use of our energy supplies.

Mar 05, 2008 Comments: 0
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Wendy Helmka understands how important advance directives are for an adult patient with mitochondrial disease.

"The doctors told me that I would have died if I had not had the advance directive, or if I had not been able to go home with 24 hour nursing care. I would have been put in a nursing home where medicines used to treat my symptoms would have damaged my mitochondria even more, and may have killed me."

Feb 27, 2008 Comments: 0
by admin

Wendy Helmka understands how important advance directives are for an adult patient with mitochondrial disease."The doctors told me that I would have died if I had not had the advance directive, or if I had not been able to go home with 24 hour nursing care. I would have been put in a nursing home where medicines used to treat my symptoms would have damaged my mitochondria even more, and may have killed me."

Feb 26, 2008 Comments: 0

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