Ricky the Wonder-kid

When you were a child, what did you want to be when you grew up? I wanted to be a superhero, cliché, I know. There weren’t many little girl super heroes and I wanted to be invincible. That dream did not end up panning out, but I did meet a little boy, Ricky who I was almost certain had super powers. Unfortunately, his “superpower” would end up with some pretty scary downfalls, similar to the stories I wished so badly to be real.

Ricky, I would learn later had no super powers, he actually had a very rare disease called congenital insensitivity to pain with anhidrosis, or CIPA. (Lambert, 2007) While initially it might not sound so bad, our perception of pain is vital to our safety and survival. Lambert explains, “People with congenital insensitivity to pain and CIPA have a severe loss of sensory perception. They can feel pressure, but not pain, so they are likely to injure or mutilate themselves without meaning to. They might know they slammed their hand in the door, it just doesn’t hurt.” Ricky was a toddler when I met him, and a very happy and well behaved kid, but it very quickly became very clear how important the perception of pain really is. The other kids in the daycare had learned through experience not to play with sharp things, or cry out if they are hurt or need assistance. Ricky did not, he would continue whatever his activity was.

Parents with children afflicted with CIPA have to come up with some very creative ways to help keep their child safe. In Ricky’s case, his father had come up with a way to use operant conditioning to teach Ricky basic things to stay away from, Ricky learned if he got near or grabbed dangerous things (stove, sharp objects, electrical cords) he would get a warning via a walkie-talkie he wore around his neck. This still required full supervision at all times, but it did provide hope, he wouldn’t learn by getting hurt, but he disliked time-outs as much as any other kid.

As you might expect, this disease is of great interest to scientist and doctors worldwide. Cambridge University genetics professor Geoff Woods is one such scientist. His team discovered that these people had two mutated copies of the PRDM12 gene as well as missing nerve endings that play a vital role in pain sensation. While there is no cure as of now, identifying this gene has provided families hope at a cure in the future. The Cambridge researchers also feel strongly that PRDM12 could be the key to helping millions of pain sufferers around the world. (Brodwin, 2015)

In essence, having the super power of not feeling pain actually has a lot more negative repercussions than one might initially imagine. Meeting Ricky helped me open my eyes and gain a greater understanding for how and why our bodies work the way they do. Our understanding of the perception of pain has come a long way, but thanks to these individuals who will never physically hurt, we are able to broaden our understanding of pain, and possibly how to alleviate the sensation if a person is in a situation which necessitates it. In my eyes, that makes Ricky, and those in his same position kind of like real life super heroes.

Sources Cited:

Lambert, K. (2007, September 21). How CIPA works. Retrieved September 09, 2016, from http://science.howstuffworks.com/life/inside-the-mind/human-brain/cipa.htm

Brodwin, E. (2015). People with a rare genetic mutation who can’t feel pain are revolutionizing how we treat it. Retrieved September 09, 2016, from http://www.businessinsider.com/people-who-cant-feel-pain-helping-create-new-pain-meds-2015-5

3 thoughts on “Ricky the Wonder-kid

  1. Elizabeth Anderson

    Your article is very interesting. There are so many facets to this rare disease that, as a parent, I could not imagine. I would think that this would be very trying to discover as an issue too. If you have never felt pain, how could you tell someone you don’t feel it? Upon further research of your topic I found that “congenital insensitivity to pain is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain” (Genetics Home Reference, 2016). With that said, peripheral neuropathy as a whole is actually experienced by 20 million people in varying states with this being on the far and rare side of the spectrum. According to the National Institute of Neurological Disorders peripheral neuropathy also refers to disorders where you feel constant pain usually caused by diabetes (NINDS, 2016). While it would be horrible to feel pain all the time, diabetes of this nature is preventable unlike Ricky’s disease. It sounds like his father has some excellent ideas on keeping him safe too through conditioning. Great post!

    Congenital insensitivity to pain. Genetics Home Reference (GHR). November 2012;http://ghr.nlm.nih.gov/condition/congenital-insensitivity-to-pain.

    NINDS. Peripheral Neuropathy Fact Sheet. (2016, March 9). Retrieved October 07, 2016, from http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.ht m

  2. jks5571 Post author

    Thanks for the comment 🙂 He is an amazing kid, still today 🙂 Meeting him really opened my eyes, and it was so cool to learn more about it again in this course.

  3. jas7079

    This is very fascinating. I never heard of this disease before reading this blog. I would think not being able to feel pain would be a “super power” as well. I personally would like to not be able to feel emotional pain, well the negative anyway. I found it very interesting how this child’s father used operant conditioning to help his son be able to not injure himself. Thank you for this information.

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