Last Tuesday I set my DVR to record ChicagoMed, a show I had never watched before, but one which I had heard would be featuring a storyline about mitochondrial disease. I was curious how this diagnosis would be portrayed on my TV screen and hoped that this would bring some much needed awareness to a condition that our family has struggled to make sense of for the last 6 years.
What I saw transpire on the screen as storyline played out was disappointing to say the least not to mention irresponsible and damaging.
Here is the post I made on Facebook, moments after watching the show:
“After watching Chicago Med tonight and their story about #mitochondrial disease, I am so disappointed in the portrayal I witnessed. It was evident that little research had been done by the show’s staff since there were many inaccuracies, but it was even more evident they did not speak with ANY parents of children with mitochondrial disease. More education, research and awareness are the only ways to combat the mis-information that I believe are leading to parents being accused of medical child abuse. #ChicagoMed I urge you to work on another episode that presents #mitoin a different light, and highlights the real struggles families are facing every day with their children.”
This episode struck a chord with me, and so many others in the mitochondrial disease community because accusations of munchausen by proxy syndrome and medical child abuse (a term more recently used), has plagued the mito community for years if not decades. Just a few years ago the story of #JustinaPelletier hit mainstream media after over a year struggle for her parents to regain custody of their daughter from Massachusetts state custody. We blogged about her story here) It was eerie to see such similarity in some of the inaccurate details played out on the screen with the ChicagoMed actors and what Justina’s family suffered through in real life. Sadly though this was not the first case of this, and upon moving to Pittsburgh I learned of another family who had experienced something very similar with 2 of their children nearly 10 years prior to Justina’s case. Sadly though these 2 families are not the only two families who have dealt with the heartache of having their children diagnosed with mitochondrial disease AND be accused of such charges. (Just a few of the mitochondrial cases which have made it into the news can be found here, here, here and here).
Following the events of the Justina Pelletier case I was asked to join the ADVOCACY Taskforce that was organized by Mitoaction. I was part of a team of medical professionals, scientific professionals, attorneys, parents and ethics experts who were brought together to improve the current environment for families struggling to care for their loved ones with mitochondrial disease. The fruits of that task force’s research, passionate discussions and efforts can be found here.
Back to ChicagoMed:
In the days following the episode of Chicago Med (entitled-Reunion, transcript here ) many organizations and individuals that support the mitochondrial disease community, came together in a show of support and dismay at the recent portrayal of Mitochondrial Disease on the set of ChicagoMed. You can read some of their thoughts, feedback and letters to the producers here:
Mitoaction & UMDF: here
Mitochondrial Medicine Society: here
Dr. Fran Kendall, Mitochondrial expert and metabolic geneticist with VMP: here and here
Dr. Richard Boles, Mitochondrial expert and metabolic geneticist with Courtagen: here
No family should have to be told the shocking and devastating news that their child has mitochondrial disease, and likewise, no family should ever be accused of causing that illness either, in an ER, without consultation with ANY of the child’s treating physicians, particularly the specialist who gave the child the diagnosis in the first place.
ChicagoMed, do the right thing and come clean, become transparent and feature the real science about mito that you failed to look into for this show. Talking to one mito doctor on the phone for a few minutes doesn’t count in our book.
Resources for families:
Mitoaction Advocacy Tool Kit
UMDF What Every Parent Needs to Know
Excellent! Thank you for this post. We must raise more awareness on ALL the different forms of mitochondrial disease that children and adults are facing. As a parent of a child with Mitochondrial Disease I am terrified of what will happen if/when we need to seek emergency care.
We are in the beginning stages of investigating a possible mitochondrial disease diagnosis for my son. It is an exhausting roller coaster of a journey full of confusion, fear, dread, hope, anxiety and overwhelm. I was so excited to watch this episode of mito as I don’t know anyone else in real life so I wanted to “see” what this possible life we are entering looks like. Now in addition to the fear of what this disease may mean for my son I am afraid of what can happen while we search for doctors to help us manage it. It makes me extremely afraid to use any local doctors that might be covered by our insurance, but who may not be knowledgeable about mito…especially in an emergency situation. If this is happening to families that actually have a diagnosis, what about those with the disease who don’t even have that yet. Unbelievable. As though the disease itself isn’t hard enough.
It looked like a to be continued episode, maybe the show will set the record right in part 2 of the story. PS. Never watch a show of fictional characters and expect the story not to work out in an hour when in reality we all know it’s not like that. When I watch it with my RN daughter she is always commenting “that’s not how we do that” or you don’t do it that way and they don’t in real life either.
It’s been some time since I’ve visited, but I, too, posted about this show on Facebook. I had never seen the show until this one episode, and it made me very angry. It took many years of wrong diagnoses to finally land on a Mito disease diagnosis, thanks to a muscle biopsy. They did our community a disservice by picking an internet diagnosed mitochondrial disease to highlight Muchausen by proxy.