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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 4 replies, 4 voices, and was last updated 2 months ago by DeAnn R.

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    • #24303
      Alyssa Silva
      Keymaster

      Hey guys. The topic of this post speaks for itself. Do you consider these words interchangeable?

      In light of disability pride month, I’ve been researching different disability-related issues to better educate myself. I don’t know why this thought randomly popped into my head, but now I’m genuinely curious. What are your thoughts?

      Personally, I see disease as the diagnosis and disability as how it impairs daily living whether it be physical or mental. So, if we used SMA as an example, I would say you could use both terms in conversation. But then I look at someone like my father who has early stages of heart disease. It has not impaired his life other than dietary and exercise changes. YET. So, would he be considered to have a disability as well since it could progress?

      I went down a RABBIT HOLE last night on this topic and the opinions people shared. So I thought I’d poll you guys too.

    • #24305
      Losmi
      Participant

      Alyssa do you know what got you interested in this topic?

      If the answer yes, have you tried probing behind that conscious reason? Probing behind it meaning is that the REAL reason?

      Since you say you went down a rabbit hole last night I think prior to continuing down the whole very good thing would be to answer above questions.

      You say this thought randomly popped inside your head, which is probably not true – as you say you are researching various disability-related topics so something prompted that thought. But if we leave that aside, why are you now genuinely curious about that?

      From lexico.com, which uses Oxford English Dictionary

      https://www.lexico.com/definition/disability

      <span class=”ind”>1. A physical or mental condition that limits a person’s movements, senses, or activities.</span>
      <div class=”exg”>
      <div class=”ex”>‘children with severe physical disabilities’</div>
      <div>

      <span class=”ind”>2. A disadvantage or handicap, especially one imposed or recognized by the law.</span>
      <div class=”exg”>
      <div class=”ex”>‘the plaintiff was under a disability’</div>
      </div>
      </div>
      </div>

    • #24307
      Alyssa Silva
      Keymaster

      Losmi, I noticed in my own writings that I used both terms and wondered if I was using them correctly. Can’t say why I decided to look it up last night in particular. Just a genuine curiosity is all. Here’s a great article I found written by a man with SMA on the topic: https://www.washingtonpost.com/opinions/disability-and-disease-arent-interchangeable/2019/03/07/5c904946-d325-11e8-b2d2-f397227b43f0_story.html

    • #24308
      Lupa F
      Participant

      I’ve never thought of them as interchangeable because I’ve progressed from essentially being not disabled as a child to fully disabled as an adult, but the disease has always been there. And from the other direction, I was misdiagnosed for about 10 years with just a generic muscular dystrophy diagnosis, so I didn’t have a specific disease to refer to when discussing disability.

    • #24315
      DeAnn R
      Keymaster

      Interesting question. I definitely think they correlate but wouldn’t necessarily consider them interchangeable.

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