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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 1 reply, 2 voices, and was last updated 6 months, 1 week ago by Alyssa Silva.

  • Author
    • #22731
      Michael Morale

      Over the past 10 days, we’ve all seen an unimaginable amount of information regarding the Coronavirus. While some are staying calm and being rational with regards to keeping themselves safe, some have gone to the store and began stockpiling for what they may think will be a six-month lock-in.

      While doctors and researchers tell us that 80% of the people who catch the Coronavirus, will probably not even know that they have it, those of us with SMA are more susceptible.

      We all have questions with regards to how to keep ourselves safe, and I thought I would share some of mine, to hopefully spur some more conversation. Below are my suggestions:

      1. Try to remain calm.
      2. Wash your hands before handling any food. This includes using disinfectant wipes and hand sanitizer regularly.
      3. If you have caregivers or family members who take care of you, insist that they wash their hands thoroughly before preparing any food products, or handling you with regards to your daily needs.
      4. Listen to the recommendations from the World Health Organization (WHO), and the Centers for Disease Control (CDC).
      5. Trying to isolate yourself away from large crowds, and if possible, for the next couple of weeks, try to remain indoors as much as possible. (This is a great excuse to binge watch Netflix.) Take advantage of it.
      6. Your neurologist or your primary care physician should know that by having SMA, you are already at a higher risk, due to your compromised immune system and upper respiratory condition. Consult with your doctor and ask them for advice on how to stay safe, and get their recommendations on what to do.
      7. If you start running a fever, and or if you start having a dry cough, contact your doctor immediately. If your doctor suggests that you go to the nearest emergency room, ask them to call the emergency room for you to let them know that you are coming in, and ask your doctor to inform them of your compromised immune system and respiratory conditions. This way, they will be better prepared to take care of you once you get there.
      8. Once your doctor tells you to go to the hospital, go to the hospital. Even if you start feeling a little better, it’s always best to get checked out by medical professionals, just to be on the safe side.
      9. Do not be afraid to ask for help, and don’t wait until your condition worsens to ask for help.
      10. Before anyone comes to your house, ask them if they had been sick in the past week, or if they have been around others who may have been exposed to the Coronavirus.

      Do you have other suggestions that you would like to share with our members? If you do, please share them, because the more suggestions that we have with regards to keeping ourselves safe, the better.

      Stay safe everyone.

    • #22736
      Alyssa Silva

      Thank you for sharing these helpful tips, Michael. From a mental health standpoint, find activities you enjoy and can unwind to. After all, stress can weaken our immune systems. I’ve been overwhelmed with everything going on, and even though I’ve been quarantined for a while now, I woke up with a little cold over the weekend. I think this is all getting to me. So it’s important I find ways to unwind and relax while taking the medical precautions as well.

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