Tuesday, December 6, 2011

Dr. Sanjay Gupta

Dr. Sanjay Gupta from CNN reports on Mito!!!


Pretty cool story about Colby Wren a GA Tech baseball player who is fighting mito. Go Colby and thank you for raising awareness.


  1. Whereas it is important to raise awareness about Mitochondrial Disease, the aspect of such an exercise regime as being followed by Colby Wren is far from the norm of people with Mitochondrial Disease! Most adult and pediatric patients are unable to begin to exercise in the manner portrayed in the video: indeed, far from portraying the real life and the disability arising from the lack of available energy in mitochondrial dysfunction, this video presents a false picture which has the potential of further marginalizing the patients with this little known disorder.

    It would be helpful for real awareness to interview a patient or a parent who is dealing with palliative care or hospice end of life care because the incidence of death from Mitochondrial Disease is high.

    Frankly, I worry about Colby in the future when his mitochondria are no longer able to provide the energy necessary to keep up with his present exercise regime!

  2. Anonymous -
    I agree with your comments. It's a fine line between finding a story that media will actually listen to versus the real truth behind the disease.

    At the end of the day, I hope that people at least start hearing the word Mitochondria and beging doing their research.

    If I've learned anything, it's that Mito manifests in each person so differently.

    Great comments and thank you for the healthy debate and insight on the "real world" of mito - not the warm fuzzy one portrayed on CNN.

    Lori Martin

  3. I had one additional viewpoint... one thing I've been hearing recently is that the frequency of Mito in young adults and adults often is not diagnosed. Perhaps they were trying to feature a "normal" person who suffers from bad mito in an effort to raise awareness with those who exeperience "weird" problems, but don't know what it is.

    Who knows... just a random thought I couldn't stop myself from sharing.

    Lori Martin

  4. I made the above comments and I am so glad that you agree with me. I am an older adult diagnosed 20 years ago and with at least on adult son also diagnosed with Mito. I have been operating support groups for Mito for over 10 years. It took 6 years to acheieve diagnosis from the time I was forced to stop working because I couldn't!!!

    Part of the problem is that the media really don't want to do interviews with families in pain after losing a child, or families where mom and several children have Mito or, indeed, one where a child is in a wheelchair and intubated.

    Mattie Stepanek made it in a wheelchair and intubated ... but ... he represented muscular dystrophy association!

  5. Lori, I hope the same thing (that this story at least raises some awareness). I also think the kid's attitude admirable and his positive outlook is good. However, with everything there is a fine line between having healthy hope and also being realistic/sensitive that should be there. Would have liked even a short sentence or two about how mitochondrial disease affects everyone differently and that more severe cases do not look like him. Even better would be a mention of UMDF ;)