Marilyn’s Message March 2018

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TO NETFLIX AND MARVEL:

In a recent episode of the Netflix series, “Jessica Jones,” celiac disease was, yet again, trivialized. Saying that celiac disease “doesn’t matter” is cruel and insensitive to the tens of millions of people around the world to whom it matters a great deal. It matters because celiac disease is a serious, genetic autoimmune disorder with no known cure. It matters because there are no treatments for celiac disease beyond strict adherence to the gluten-free diet for life, which, sadly, does not mitigate the symptoms for a significant portion of celiac disease patients. It matters because approximately 80% of all individuals with celiac disease have not been correctly diagnosed, meaning tens of millions are suffering, visiting doctors, missing work and school, and they don’t know why. It matters because people with celiac disease have double the risk of developing coronary artery disease and a four-fold greater risk of developing intestinal cancers. It matters because patients with celiac disease are significantly more likely to have one or more of dozens of other diseases and conditions, many of which are autoimmune, including type 1 diabetes, thyroid disease, rheumatoid arthritis, multiple sclerosis, and depression and anxiety, among others. It matters because undiagnosed celiac disease can also lead to anemia, osteoporosis, peripheral neuropathy and infertility and miscarriage, to name just a few of the many life-altering conditions.

Most importantly, it matters because people are suffering with celiac disease. It matters because people are in pain. It matters because, even though the cause is indirect and it may be rare, people are dying. It matters because your characters gave inaccurate information that may discourage many from being screened for celiac disease for fear of being ridiculed, which will lead to long-term health complications, and yes, even death. It matters because you chose to conflate celiac disease with the joke of the gluten-free fad diet, damning people for a chronic disease for which they did not ask, and from which they will suffer from for the rest of their lives – knowing that every single bite of food has the potential to destroy their health.

As the mother of a child who suffered horribly with this disease, and as the Chief Executive Officer of an organization representing the community of celiac disease patients, I can’t imagine why you would allow that clip in your show belittling this disease. Of course celiac disease does not cause the same number of deaths from the war in Syria or from gun violence. The same can be said of many chronic diseases. But people with chronic disease do matter. In fact, they are your viewers.

I look forward to hearing from you how we might address the comments made on your show with my community. Many are demanding a response, including me.

Sincerely,

Marilyn Grunzweig Geller
Chief Executive Officer

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