Rocco, You’re Not Alone

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Congratulations Rocco on making it to the World Series! We continue to offer our encouragement and support.

Original Post August 8, 2008

Tampa Rays MLB player Rocco Baldelli Living with Mitochondrial Disease

He’s in the news. His symptoms are vague. He looks tired.

Most people don’t have another point of reference for the disorder that the New York Times allures to as a “mysterious cell disorder” which causes occasional “muscle weakness”.

For those of us who understand the unpredictable complexity of mitochondrial disease, it’s not so mysterious, just exhausting. As my friend 26 year old Lisa Parker (diagnosed when she was 24) told me when we first met, “I thought I had the flu…but then I never got better.”

So his story makes the reader think, “hmmm…poor guy has some rare condition. He probably picked it up while traveling. But he was fine before – how bad could it be? Get back in the game.”

In fact, in some instances, Baldelli has received scathing reviews from fans calling him “a slacker”. After all, like most people with mitochondrial disease, “he doesn’t look sick”.

Five years from today, when a celebrity is diagnosed with this “mysterious cell disorder”, there will be a general public nod of recognition for the label which describes this confusing and complex set of neuromuscular symptoms. Ten years from now, we will all know about mitochondrial disease (“Mito”). It is my passionate hope that our efforts to raise awareness about the disorder will reach people like Rocco Baldelli and his team so he knows that he is not alone. Mitochondrial disorders affect thousands of adults and children regardless of their age, lifestyle, gender, socioeconomic status or race. Treatment is supportive; there is no cure. Quality of life is of utmost importance.

A conservative estimate suggests that one in 4000 individuals in the US have, or will develop, mitochondrial disease. However, that estimate is about 10 years old (ancient in our current information age) and we are only beginning to get a glimmer of understanding of the role that the mitochondria (the powerhouse of the cell) have on our health and aging process. Five years ago only a handful of basic science researchers were publishing about the link between mitochondrial dysfunction and diseases of aging such as diabetes, Parkinson’s and Alzheimers. Today, we (MitoAction) are partnering with major biotechs and pharmas such as Sirtris and Edison to support their efforts to find drugs that will not only effectively treat mitochondrial disease patients, but will improve mitochondrial function in healthy individuals as well, potentially slowing the degenerative aging process.

I hear so many stories from adults diagnosed with “Mito” who are still coming to grips with the disability they didn’t ask for. Many of these patients were successful, bright, athletic, world travelers, mothers, husbands, etc. before the onset of puzzling and multi-system symptoms. Stand two people together with the exact same mitochondrial disorder and they won’t necessarily mirror the same symptoms. So many organs can be affected, and in such a vast variety of ways – after all, the mitochondria are providing the energy for the body to function at an incredibly sophisticated and accelerated level. Nonetheless, “Mito” is an energy metabolism disorder and the exhaustion, muscle weakness, and unpredictability of the day is common ground for all children and adults who are faced with a life which includes mitochondrial disease.

Courage, Rocco, courage.

Our gift to you is community, a place where you can educate yourself about this complex disease and get the encouragement you need to make the most of your life. In other words, it’s about living anyway today, and you are not alone.

Watch stories of people living with Mito on MitoAction’s YouTube channel