Watching My Son Deal With the Never-ending Pain of EB

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by Patrice Williams |

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moments of joy | Epidermolysis Bullosa News | Main graphic for column titled

I heard my son Jonah sigh as he sat in the stadium seat beside me at Friday night’s minor league baseball game in our hometown. It was his pain sigh. I know it well. Here we were again at an event that should be all fun, and he couldn’t even enjoy it.

“What’s the matter, buddy?” I asked as I rubbed his back.

“So Tony Dungy’s son can’t feel pain?”

It had come up in a conversation earlier in the day that one of former NFL coach Tony Dungy’s sons, Jordan, has a rare congenital disease in which he can’t feel pain. “I can’t imagine not being in pain,” Jonah said as he took a sip of water and then cringed as it stung the wounds in his mouth. “Like, I can’t even fathom that.”

“I know, bud,” I replied wearily. “I’m so sorry.”

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I felt helpless as I sat there and explained to him the purpose of us feeling pain, and that for most people, the ability to feel pain is a good thing. It warns our bodies of danger and cues us to be careful and to protect ourselves. But even as I lamely explained it, I was overwhelmed at the pointlessness of Jonah’s pain. It’s just pain. For no good reason. And it sucks.

symptoms of epidermolysis bullosa | Epidermolysis Bullosa News | Jonah and Gideon sit in a stadium watching a Winston-Salem Dash minor league baseball game.

From right, Jonah and his brother Gideon at Friday night’s Winston-Salem Dash game in North Carolina. (Photo by Patrice Williams)

Because of his epidermolysis bullosa (EB), Jonah’s pain is caused by blisters that pop up out of nowhere with the slightest of friction. We’re talking turning over in bed, the tag on a shirt, or a gentle rub of an itchy eye. And sometimes he has blisters that appear for absolutely no reason at all.

He’s never known what it’s like to be without pain. He was raw and torn to pieces the minute he exited the womb. His baseline for pain is probably what most of us would consider a seven out of 10. He’s always physically suffering at some level. Whether it’s an inability to eat or drink because of blisters in his mouth, trouble walking because of blisters on his heels, being unable to bend his elbow because of a wrap around a blister on his arm, or a thousand other scenarios, it’s literally always something.

And I hate it so much for him. The inability, as a mother, to make it better for him is one of the worst things about being an EB caregiver. For us parents, it’s just a whole bunch of wound care, medication administration, pep talks, and apologizing. It’s too much and not enough all at the same time. It’s all undeniably necessary, and yet the futility of it all is completely maddening — because it’s every day, over and over, the same thing. Drain the boo-boo, patch the boo-boo, dry the tears, apologize. Now do that 20 times all over his body. Rinse and repeat.

I need to be able to help my son. I need to do more. I need to be able to take it away. I tell him all the time I’d take it on myself if it meant I could take it off of him. “No way,” he responds. “I’d never want this put on you.”

Oh, my heart.

How do we help these kids? How do we make a difference in their lives? How do we rush a cure before the damage is already permanently done? How do I make life better for my son?

It’s not enough. It will never be enough.

The only point of today’s column is to say EB sucks. It still really, really sucks.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.


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