Royal Pains gives me a royal pain

Mom almost fainted and I nearly fell off the couch, when watching a recent episode of USA Network’s Royal Pains, a comedy television series about a concierge doctor-on- demand working in the Hampton’s. When attempting to diagnose Divya’s new boyfriend’s arm numbness and paralysis, Dr. Jeremiah said he may have CMT, “which is almost always fatal.”

At that pronouncement my mom’s head whipped around, staring at me, as shock registered on my face. “That’s NOT true!” I tried to reassure her.

At least that’s not what my doctor told me, when he told me I have CMT.  I recall, after finally receiving the correct diagnosis at age 47, and learning I have a progressive, degenerative nerve disorder, my neurologist was quick to add, “Don’t worry. It won’t shorten your life. It will just slow you down.” Quite the understatement.

Since then, I have read everything I can find about CMT, and have not seen it written anywhere that CMT “is almost always fatal.”  However, with some more severe types of CMT rare incidents of phrenic nerve involvement can sometimes lead to difficulty in breathing.  So, I suppose if you live long enough this may lead to your eventual demise.

Just found this on Pub Med: http://www.ncbi.nlm.nih.gov/pubmed/16294569

(Diaphragmatic weakness in Charcot-Marie-Tooth (CMT) disease may be more common than generally acknowledged. Although most patients with CMT have a normal lifespan, the subset of patients with diaphragmatic weakness may be at a higher risk of pulmonary morbidity and early mortality).  

I’m sure I’ve read this before, but chose to ignore it, because at that time I was not experiencing any problems breathing. On top of that, my doctor said, “What’s the chance of you having a rare genetic disorder and also having the very rare chance of difficulty breathing.” Turns out for me, the chances were pretty high.

However, fortunately for the hot Argentinean polo player, Rafa, his arm paralysis was not due to CMT. Rafa instead suffered from a pinched nerve after Divya had fallen asleep in his arms.

Anyway, I wrote a letter to USA Network informing them of their mistake, requesting they  feature CMT on another episode of Royal Pains with HankMed giving the correct information.

Here’s my letter:

USA Network
30 Rockefeller Plaza
21st Floor
New York, NY 10112

To the writers of Royal Pains:

As someone who struggles with Charcot-Marie-Tooth (CMT) neuromuscular disease, I was very pleased to see that you mentioned CMT disease on your recent show on September 5. However, you alarmed my mother and countless others by incorrectly stating that Charcot-Marie-Tooth is “almost always fatal.”

CMT, the most commonly inherited peripheral neuropathy, affects 1 out of 2,500 people or approximately 150,000 Americans. Yet, most people and many physicians have never heard of this degenerative genetic disorder.

As founder of Upstate NY CMT and an advocate for patients, I would greatly appreciate your assistance in educating the public about CMT, by featuring this puzzling disorder on another episode of Royal Pains.

This disorder could make an interesting puzzle for Hank to diagnose, since CMT is frequently mistaken for MS, Spinal stenosis, or Muscular Dystrophy.  Further, some patients have been told that they are just clumsy, when they present with tripping over their own feet. Others are mistaken for being drunk due to the off-kilter gait associated with CMT.

Additionally, most people sense when they are about to fall and can catch themselves, but with CMT many times we find ourselves suddenly splat on the floor with no warning, because we lose the sense of  the relative position of neighboring parts of the body. (Proprioception).

I recently wrote an article for “Medical Mysteries” for a physician’s blog detailing how this genetic disease manifests itself. In addition to the arm numbness and paralysis mentioned on your show as experienced by Rafi, some other common signs of CMT include the following: muscle weakness and wasting in legs, arms, hands and feet, difficulty breathing, scoliosis, sensory loss in feet, foot drop, and foot deformities.  People with CMT lose the normal function of their hands, arms and legs.

For more information on CMT visit http://www.cmtausa.org

Kind regards,
Melinda Lang, Rph
Upstate NY CMT founder

So, I’m asking if anyone is reading, please watch Royal Pains Wednesday nights at 9 PM on USA Network to keep the ratings up and the show on the air, at least until they get it right.

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This entry was posted in Charcot-Marie-Tooth disease, CMTA, Health CMT, MS, Neurologist, neuromuscular disease, peripheral neuropathy, STAR and tagged , , , , , , . Bookmark the permalink.

6 Responses to Royal Pains gives me a royal pain

  1. Emily N says:

    I just found your blog post. I was watching the show on Hulu for the first time tonight since USA doesn’t post episodes long after they originally air. When I heard Jeremiah say the comment about “the nearly always fatal Charcot-Marie-Tooth neuropathy” I rewinded the video and played the scene back thinking, “he could not have just said that.” I was diagnosed with CMT when I was 2 years old. Now 20 I live a perfectly normal and healthy life. I am so grateful that you sent a letter to the writers. I’m thinking about doing the same even though it’s been two months since the original air date. It frustrates me that they misinformed the public. I study media communications at my university and we’re always taught to do our research before writing anything be it a press release, news article, or television script. CMT is the most common neurological disease and yet no one knows about it. Thank you for being an advocate.

    Like

    • cmtny says:

      Emily even though the show originally aired a couple of months ago, it’s not too late to write to them now. The more feedback they receive the better. I wrote to them last year requesting they include something about CMT on the show, but sure wasn’t expecting they would get it so wrong. Thanks for reading. Best of luck in your career in media communications.

      Like

  2. GOOD FOR YOU!!!! I love that you sent them a letter. Hopefully they will soon ‘Get it right!’
    Christine

    Like

    • cmtny says:

      I sent letters last year suggesting they do a show about CMT and sent one to House just B4 I found out the show was canceled. Who knows if anyone reads anything I write??
      I blogged. I tweeted. I Facebooked. Will not give up.

      Like

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