Why NBC Failed The Mito Community – TWICE!

Dear NBC

It is beyond ironic that you would choose Rare Disease Month to insult families living with the rare condition, Mitochondrial disease. 

The Mito Community watched Chicago Med last night, with great hope, that you might help to raise awareness of the devastating effects of this complex, disabling, and sometimes fatal disease that impacts an estimated 1 in 4,000 people.  We felt your storyline deeply, as you showed the dark reality of what can happen to families when well-meaning, but misinformed medical doctors fall back on damaging diagnosis such as Conversion Disorder, Medical Child Abuse and/or Munchausen by Proxy.  But, the information that you presented was grossly inaccurate and damaging.   

Shame on your writing staff for not doing their research!

You failed this topic on two fronts. Not only did you present misleading information about Mito disease (for instance, there are current genetic panels able to identify variants of it now and these panels are expanding monthly, and, muscle biopsies are not the only way to diagnose it), but, you also botched the information presented on another condition, Conversion disorder. If you had done your research, you may have realized that it has a diagnostic criteria that takes months of observation and requires that all medical symptoms be evaluated and ruled out first. It is NOT something that can be diagnosed after a few hours by an ER doc and one unsubstantial dialogue with a psychiatrist who never took the time to evaluate past medical records or speak to patient’s current physicians!

Sadly, the one thing you did get right was how often this scenario actually takes place (as medically disgusting as it is). But, you forgot to follow-up and portray the REAL damage that is done with this type of inaccurate diagnosis that often results in permanent  and irreversible physical disabilities and sometimes death in these patients due to all diagnostics and treatments being sidelined for “psych programs” that ironically further traumatize and cause long-term PTSD in patients and, medically make them worse.  We invite you learn more about the problems caused when physicians do not recognize rare symptoms and jump to a psych diagnosis. Check out this published white paper on Conversion Disorder and see why this dangerous new trend is causing unnecessary burden and heartbreak for so many rare disease families.  

Today social media boards are lighting up.  Mito families who are struggling, or have buried a child because of what you called a “wastebasket diagnosis” are outraged and hurt by this inaccuracy and insensitivity.  We stand behind our Mito families and thank experienced Mito physicians who are speaking out today, such as Dr. Frances Kendall who posted,  

“In an unprecedented moment in which Hollywood and the mainstream media could have promoted and improved the understanding of mitochondrial disease, they failed miserably instead shrouding a complex disease in misperception, misunderstanding, doubt, suspicion and inaccurate science.

This program is an affront to all those who have died or are struggling every day with the complex problems associated with a mitochondrial disease.  I am appalled at the inaccuracies of the program at large to include questioning her diagnosis based on a lack of muscle biopsy results. Those of us who are true experts in this disease know that many patients are diagnosed with molecular testing as well and do not require invasive studies. Similar to the Justina Pelletier's case, this young girl's diagnosis was questioned but none of her treating physicians were involved in the discussion to remove her from her parent's care.

I am heartbroken, dismayed, angry, and disappointed that a patient population often decimated by this horrible disease has to once again deal with the added burden of mistrust and mistreatment by ignorant and misinformed medical, institutional and social services communities. This was indeed a wasted opportunity, at best, and at worst a damaging event that marginalizes a horrible disease process casting doubt on all those struggling every day with this disease. 

We also appeal to you, NBC to right this wrong you have created. We invite you to contact us at info@tcapp.org and we will introduce you to physicians and families who can share the truth of living life with Mito disease.  

For more information on Mito disease check out:

www.mitoaction.org

www.umdf.org