Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Day 3 – Every Story is Unique

The mitochondria represent the most complicated enzyme system in the body, requiring over 1,000 genes to function properly.  With so many genes, patients can present in hundreds of ways.

Mitochondrial disease can appear at any age. For some it appears at birth. For others it develops over time.

Using the “power plant analogy,” since the mitochondria are the body’s power plants, the impacts of mitochondrial disease can range from mild to fatal, from a “brown out” to a “black out.”

faces-of-mitochondrial-disease-10-2014-2–      Some types are progressive and result in significant neurologic deterioration

–      Many result in a lifetime of challenges that vary across the lifespan

–      All have impacts that are difficult to measure for families and caregivers

Mitochondrial disease primarily impacts brain and muscle, but can affect many other systems like heart, liver, kidneys, and gut…

Results often are may be: fatigue, muscle weakness and loss, vision/hearing loss, pain, social/behavior disorders, migraine, seizures, respiratory disorders, learning disabilities, poor growth, thyroid problems, gastrointestinal disorders, diabetes, neurological problems, dementia

All this is overlaid by good and bad days caused by significant inconsistency-like the electricity flickering in different areas of a community

If you have seen a person with Parkinson’s disease, Huntington’s disease, Alzheimer’s disease, or ALS, you have encountered mitochondrial dysfunction.  If you have met a child with autism, Asperger’s syndrome, or epilepsy, mitochondrial dysfunction may already be affecting their developing brains.

#20DaysofGlow

Get Your Glow On: Share this information with your network of friends and family to help us raise awareness for mitochondrial disease.

 

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#GAGivesDay 5: Colby Wren, One of the MANY Faces of Mitochondrial Disease

Mitochondrial disease is a complex, underdiagnosed disease that may appear anytime – at birth, in the teen years or, as an adult. The disease can attack at any age and has links to other more familiar disorders: Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease (ALS), muscular dystrophy. We’re learning it’s not at all rare. But, due to a lack of physician and public awareness, mitochondrial disease is not often diagnosed.

Colby Wren {One Face, One Story}

Some of you may already know Colby from Hope Flies Home Run Challenge, Hope Flies with the Braves or even the special featured on CNN.

From the outside, you would never know that Colby has mitochondrial disease. When he practiced and played football games, he would get sick during and after each. Now that he’s been diagnosed, he knows mitochondrial disease is just something in his life he has had to learn to manage on a daily basis.

Colby and Fans at Hope Flies Home Run Challenge

Colby and Fans at Hope Flies Home Run Challenge

Physically, Colby was never in better shape than when I first started sports training. My body took the initial training really well, but after the first year it really took a toll. I began getting many of symptoms of mitochondrial disease, which I had neglected noticing.

Needless to say, when the season ended and he had the opportunity to rest, he did so freely. Checkups and blood work during the times of high activity had very negative numbers when it came to my mito metrics, but Colby noticed that other areas my body was thriving because he was in great shape. The same cycle occurred his second year playing baseball at Georgia Tech: get in great shape, hit a wall, and that year his grades hit an all-time low. Georgia Tech is challenging enough when you are just a student there, but when you are a student with incredible mental and physical fatigue, those calculus classes and science classes can be ruthless. Falling just under a 3.0 my freshman year, my sophomore year was very lackluster and I struggled to recall almost anything that I studied for. This is when I knew a change needed to occur.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

If Colby was a baseball star with all of the talent in the world, he might have thought twice about the decision to stop playing baseball. Meeting with Dr. Shoffner during his last semester playing gave me some incredible insight. Colby’s body, though in shape, was not as healthy as he needed it to be. But when you’re given options to continue playing a few years versus being able to be healthy and active for your future generations it is a very simple decision. Colby immediately gave his body lots of rest and neglected his health, which was the most important in the long run.

Colby is currently an Ambassador for the Foundation for Mitochondrial Medicine and sharing his story daily to help us raise awareness and fuel connections.  Colby helped us launch the Hope Flies Home Run Challenge in 2012 and has been an active part of our Hope Flies events in the Atlanta area.

Colby has been an inspiration to many others affected by mitochondrial disease and even called a “hero” by one mito mom!

Share Colby’s Story with your network of friends to help us raise awareness and give hope to so many battling mitochondrial disease daily.

 

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