Living with Mito
Highlights from the MitoAction Walk 08
September 21st, 2008
Cambridge, Massachusetts615 people came together for one cause, and the result was incredible!
Read the 2008 Mitochondrial Disease Awareness Week Press Release
Five years ago, before MitoAction even existed as an organization, a family who is dealing with the diagnosis of mitochondrial disease may have been alone in their efforts to understand and find support and advocacy for the disorder.
- Sep 26, 2008
- Comments: 0
Rocco, You're Not Alone
Tampa Rays MLB player Rocco Baldelli Living with Mitochondrial Disease
He's in the news. His symptoms are vague. He looks tired.
- Aug 8, 2008
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Mito Mom wears many different hats!
Well today is no different from any other day when you have two children with Mitochondrial Disease ages 14 and 18. It is chaotic, tiring, inspirational, as well as challenging to say the least. Better get my hats ready!
- Jun 30, 2008
- Comments: 1
Use Your Energy Wisely
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 5, 2008
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Advice from a Disability Advocate
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
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Coping with your Child's Diagnosis
The doctors tell me my son has mitochondrial disease. They say it’s a progressive, incurable disease, but they can’t tell me what will happen next or when it will happen or even if he’s going to live to be a grown-up. How do I cope?
- Feb 19, 2008
- Comments: 1
Looking normal
For six months we have been fighting with our insurance company in order to get our daughter Eva a wheelchair. She turns 4 in April, and all of a sudden we left the world of overgrown baby items and crossed over into the land of special needs and durable medical equipment. Eva has Leigh’s disease, a form of mitochondrial disease, that affects her muscles and neurologic system such that she cannot walk or talk. Sounds terrible, right?
- Feb 16, 2008
- Comments: 2
Exercise - new research
Is Exercise a New Year’s Resolution for People Affected by Mitochondrial Diseases?
- Jan 5, 2008
- Comments: 0
Dealing with Holiday Stress
December 7, 2007 General Meeting - discussion dealing with holiday stress, importance of watching fluid intake
Moderated by Cristy Balcells, MitoAction Executive Director
Full recording (6.4 Mb, MP3 file)
- Dec 7, 2007
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Heat Intolerance
“My child or I don’t tolerate heat very well - how can we survive the summer?”
Managing Very Warm Weather
Traveling in the summer or going to a hot climate can be challenging for some people with mitochondrial disorders. There are several suggestions that may help to keep you cool.
- Sep 29, 2007
- Comments: 0
