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How do you explain SMA to others?
For someone unfamiliar with SMA, explaining the science behind the disease can be confusing. Recently, I shared that I have been interviewing many nurses to fill my last nurse’s position. When explaining what SMA is to them, some seemed to understand. Others, not so much.
When explaining SMA to others, have you found the best approach? Is it talking about everyday life? Is it talking about the missing SMN1 gene? Do you compare SMA to other similar, well-known diseases, such as ALS?
SMA is not a one-size-fits-all answer, so I would love to hear your perspective.
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4 Replies
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Hey Alyssa –
To me, I think it depends on the situation and who you’re explaining it to. If it’s a medical person, more detail. If it’s someone curious, then less. In your situation, I would handle those interviews like I used to handle job interviews at work before I retired. Most of my evaluation of their technical skills were from their resume and references (and yes, they can embellish), so I’d ask one or two technical questions to assess their understanding. Most of the questions were soft skills as we’d be working together and I needed to understand how they would interact with me and also with their peers (folks already on my team). That chemistry is important.
So, in your case, the specific nature of details on SMA might not be relevant to assess their ability to provide you with the care and support needed. For me, I’d say something along the lines of, “I have Spinal Muscular Atrophy, Type 3. It is a progressively degenerative condition as I lack a certain protein and this causes signals to not reach my muscles, so the motor neurons die which causes the muscles to atrophy/weaken.” And then describe the nature of the help you will need. At that very specific point, I would stop and give them an opportunity to ask any questions. If they’re reluctant to ask questions, I would ask them if they’ve ever worked with an SMA patient before, if so, what was that experience like, and if not, again prompt them for questions.
To be clear, I have NEVER hired anyone who didn’t ask good questions. You can tell a lot about someone by the questions they ask.
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Thanks for your input, Mike. I do agree that the explanation varies depending on the situation that I’m in. In the case with the nurses, I never know how much information to divulge, especially if I’m not going to hire them. But you have some great points and ideas here that I will have to pocket for the future.
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I compare it to ALS but for kids. Same idea. Nerves die. Muscles waste. But SMA hits earlier. People know ALS is bad. They get it immediately. Then I explain the difference if they ask.
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That’s kind of how I have always gone about it as well. With kids, I keep it very simplistic. But if they don’t stop asking questions and I start to get annoyed, I tell them this is how God made me, and they usually stop after that. 😂 For some reason, they never question that!
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