CIDP is a terrible name!

Posted on November 17, 2013

I spend a lot of time searching for information on CIDP. Most of the information could be classified as ‘hearsay’. There are probably a lot of truths in many of these theories, but the information is in no way reliable. I am also not someone you would want disseminating truth from fiction, so I won’t. I will just say that there is a lot we don’t know about CIDP, but we know a lot more than we knew yesterday. And I can’t wait to learn more tomorrow.

This leads me to my very favorite CIDP theory. Some fairly prominent doctors believe that Franklin Delano Roosevelt’s paralytic illness was actually CIDP instead of Polio. Ok, so the more common theory is that FDR had Guillain-Barre, but I’m not interested in arguing the differences between GBS and CIDP. Frankly (Franklin haha) I don’t understand these differences, though not for a lack of trying. Information is just very hard to come by and differences are microscopic.

Check out this Wiki (I know, I know) on FDR’s Paralytic Illness.

This leads me to my question. What would the impact be of such a high profile figure becoming the face of my disease?

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I believe I could ask 100 people what they know about Amyotrophic Lateral Sclerosis, and I would be surprised if 10 people could tell me something worthwhile about ALS. But I could ask those same 100 people what they know about Lou Gehrig’s Disease. And I feel like the majority of these people could tell me at the very least that it is a terrible disease that took the life of a famous (and incredibly strong) baseball player in a very short period of time. And though most probably don’t understand the specifics of ALS, most understand the impact Lou Gehrig’s Disease has on a human life. And that’s powerful. I could say Multiple Sclerosis and you may have read that a Nascar driver named Trevor Bayne was recently diagnosed. Pancreatic Cancer, Patrick Swayze. Parkinson’s, Michael J. Fox.

Update: This was originally written and posted before the Ice Bucket Challenge.

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CIDP doesn’t have a high profile figure as the face of this disease. So if FDR was the face of CIDP, would it matter almost 70 years after his death? Is there any value in holding onto the potential of a misdiagnosis in hopes of advocating for more research, more visibility, more understanding? I’m starting to believe that the connection needs to be emotional. It may not be possible to create that moment of discovery with someone who is long gone. A global figure has the potential to bring a community together, to comfort those in need, to fundraise, and in the case of Lou Gehrig, to became the a disease’s name.

Update: Did you know that William “The Refrigerator” Perry has CIDP?

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At this time, CIDP is stuck with its unremarkable (or overly remarkable) name. Those four letters stand for Chronic Inflammatory Demyelinating Polyneuropathy. I say these words to someone, and they are unable to repeat it back to me. It’s an absurd name, meant for the research scientists and medical providers who treat it. What would we call it if it was meant for those who are battling it? When I first broke the name down, this was how I originally processed it:

Chronic – Bummer.

Inflammatory – I don’t look swollen…

Demyelinating – De-What?

Polyneuropathy – ugh…

Getting my diagnosis was life changing for me. It told me what was happening to my body and it gave me a community. I was so desperate for a diagnosis that I will never be able to describe the relief it has given me. Someone very special inadvertently taught me it’s not the name, but the diagnosis that’s so important.

My therapist (SuperShrink?) and I have spent a lot of time on my struggle with CIDP. She knows how terribly I’ve coped at times, and other times how I have embraced some of the changes.  She knows the most amusing and the most gruesome details. She knows it all. But in all of her wise owl genius, there is one thing she does not know. And that is that the D comes before the P in CIDP. She has always said CIPD. And to be totally honest, I find it charming coming from her. If anyone else made this mistake, It would bother me. I would correct them.

I have come up with a theory as to why she says CIPD instead of CIDP. Have you seen the commercials for COPD? The P comes before the D. I believe she has heard COPD so often, that to her, my disorder is CIPD.

During my first meeting with SuperNeuro, I asked if I could name my disorder if it happened to be a new discovery. She said there are times when disorders are named with the initials of the first person to be found with it. This wasn’t good enough for me, I told her I wanted to name it “This Sucks Disorder”. And while I know TSD probably isn’t the best name, is there a better name than CIDP? Can a disorder be renamed in this day and age? I’m going to start brainstorming names. Let me know if you come up with something.

What Others Are Saying

  1. Roy December 15, 2014 at 7:03 pm

    I would call it the WTFD

  2. ronni ashcroft February 4, 2016 at 1:04 pm

    i have NO bloody idea whether 3 years on this will get to you. but this piece is one of THE best first-person pieces i’ve ever read on CIDP. if it were up to me (who was
    a writer, but sometimes becomes a functional illiterate when writing something which applies to me medically, and little better than harpo marx when speaking about the
    same), i would love to use some (variant) (variant!) on ‘gas-lighting.’ as i’ve wondered
    after 15 years what is left of my myelin, i also HAVE wondered if this entire illness
    was invented by charles boyer. when my uber-neuro diagnosed this in nyc — the sweetest guy — i just looked at him, bemused, confused and said:
    dr brannagan, i think i must have munchausan by someone else’s proxy!

    half the people i know think i have copd. i do not try to disuade them. but i am TOTALLY convinced that a study should be done on alzheimer’s patients to find out
    if there is any part of their mind which has made an unconscious decision to just ‘let go’
    because they are SO BLOODY TIRED OF REMEMBERING every acronym illness they
    have. it is exhausting.

    so is explaining CIDP. and i agree a million percent: this disease needs a ‘face.’

    again, your piece was terrific.

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