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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 3 replies, 4 voices, and was last updated 1 year, 3 months ago by DeAnn R.

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    • #19419
      Brianna Albers
      Keymaster

      Happy Tuesday! My latest column is up, in which I talk about illness anxiety and its impact on my everyday life. I’ve written several columns on the topic, but the more I learn about the condition, the easier it becomes to step back and say, “Oh, that’s what’s happening. It all makes sense now.” Labeling my anxiety as illness anxiety helps me detach and recognize it for what it is, which is to say mostly irrational.

      Of course, I still struggle with illness anxiety. I recently got a cut on the back of my neck, and I immediately spiraled into sepsis territory, constantly on the lookout for evidence of infection. In a way, the anxiety makes sense—if it were to get infected, my immune system would struggle to keep up. But anxiety quickly becomes obsessive for me, to the point where I can’t think of much else, so I’m practicing detachment. Every morning I wake up and tell myself, “You’re not dead yet.”

      Do you ever find yourself obsessing about your health? If so, how do you step back and get some space from your fears?

    • #19438
      Tracy Odell
      Participant

      Hi Brianna,

      You have captured illness anxiety quite well, and help us understand the repeated traumas (or close-calls) that bring you to where you are now. Thank you for that.

      I  have the opposite perspective. I think because I was forced to live in an institution (i.e., hospital) from the age of 7 until I signed myself out at 18, I firmly rejected the medical model from a young age. I normalized everything that went on with my body. I’m happy to do “exercises” or massage, but not happy to do something called “therapy” and having people called therapists do it to me. Don’t get me started on nurses.

      I was always told I would get pneumonia if I got a chill, and a few months after my release from the institution, I got splashed by a car spraying me with buckets icy water during the spring thaw, and shivered until I got home and warm. I settled in to get the pneumonia that everyone said would be coming my way, and when it didn’t, I felt I had been misled all my life — that others had used my disability to rationalize controlling me.  I became quite a risk taker after that. It was very liberating!

      If my some miracle I happen to cut myself, I will use polysporen or peroxide on it, and otherwise let nature will do its natural healing thing. I don’t think about it getting infected. I have my attendants take sensible precautions with regard to handwashing, but I’m not afraid of germs. If my attendants wear gloves, it’s more for their comfort and fear levels than mine. I got athlete’s foot once — still don’t know how, but felt irrationally proud of myself.

      People I know with anxiety disorders have a great deal of trouble convincing themselves that the risk is too small to be worried about. Even a small risk is proof that there is a reason to be worried.

      I think what you are doing by trying to be aware of what is anxiety and talk yourself out of it as much as possible is a good idea. This kind of anxiety is probably a manifestation of the helplessness that many people in our situation may feel. Things that we are able to control by more careful hygiene, antibiotics, etc., perhaps take on greater weight than some of the things that we cannot control because of the nature of our disabilities and our reliance on other people.

       

    • #19454
      Adnan Hafizovic
      Participant

      The reason we have anxiety is because we are physically weak. The tablets for calm can help me, me helped   using magnesium. I had the fear that when I was alone, and once  happened to me that I was a few minutes  longer alone, and I got a panic attack , stronger heartbeats, choking and I thought I would faint, but of course this did not happen, it was just my imaginary fear. Fortunately, I’ve solved this problem, although sometimes I have anxiety, but very rarely. I forgot to I say that deep-controlled breathing calms down.

    • #19483
      DeAnn R
      Keymaster

      From across the room I can hear if someone coughs and I just cringe. Not to mention it’s so irritating when someone says “its allergies” but I know otherwise. I’m a self diagnosed germaphobe. My anxiety pretty much ends there as far as illness goes though. I’m pretty much the opposite of you as I avoid doctors if at all possible. Maybe to avoid germs, I don’t know. I kind of have a 3 day rule. If something is going on and it doesn’t improve within 3 days I’ll re-assess the situation. Of course there are exceptions like when I broke my arm or had to have my gallbladder out (but that was a fiasco so wish I’d’ve waited the 3 days.)

      Here’s an example of my 3 day rule coming through for me. One day I had some soreness behind my leg. Felt like it might have been bruised. Day two I had my PCA check it. She noticed some warmth and redness. The next day it wasn’t better so I called the clinic. Of course it was a weekend so they sent me to the hospital to do an ultrasound as they suspected a blood clot. Sure enough that’s what it was, but thankfully it was “superficial” so it wasn’t of concern. So, even though I’m concerned about something I give it a little time. If that’s a good thing or a bad thing who knows, but it helps me not panic about things out of my control. Well except for that lady who coughed at the grocery store…ugh.

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