SMA News Forums Forums Our Community 31 Days of SMA 2021 31 Days of SMA 2022 Day 28 of #31Days ofSMA: Life Is What Happens While Waiting for a Diagnosis

  • Day 28 of #31Days ofSMA: Life Is What Happens While Waiting for a Diagnosis

    Posted by jessie-madrigal-fletcher on August 29, 2022 at 7:54 pm

    Jessica Keogh‘s delay in receiving an accurate diagnosis wasn’t for a lack of trying. Her parents took her to all the best specialists, but on each visit, they were told she was “so unique.”

    While pursuing a diagnosis Jessica got on with her life, living it to the fullest and serving her community by using her unique skills. She’s teaching sixth- through eighth-grade students emotional support and loving every second.

    “Life is precious, live it on purpose!”

    Jessica, those are words to live by!

    Now back to our SMA community, how was your diagnosis journey? Was it straightforward?

    Click here to read the rest of Jessica’s story and find out more about her life with SMA.

    SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.

    alyssa-silva replied 1 year, 6 months ago 3 Members · 2 Replies
  • 2 Replies
  • deann-r

    Member
    August 29, 2022 at 9:02 pm

    With newborn screening becoming more commonplace I’m hopeful diagnosis will be more straightforward for the upcoming generations. My mom brought me to the clinic 3 times knowing something wasn’t right when I wasn’t walking. Doctors wrote it off saying I’d catch up. I didn’t, and a muscle biopsy indicated SMA. When my brother was born they said he didn’t have SMA. When he had an abdominal hernia at a few months old they revaluated and concluded he did have it. Even when there are obvious signs diagnosis can be tricky.

    Jessica’s situation must have been frustrating. She’s got a great outlook though and I love her takeaways: “Life is precious, live it on purpose!
    Never lose hope.
    Community is so important, so please reach out to us if we can provide you with support in getting connected.”

  • alyssa-silva

    Member
    August 30, 2022 at 4:03 pm

    Yes, my parents had a similar experience with my diagnosis. Not much was known about SMA back then. It’s hard to believe that diagnosing only became a much more straightforward process in the last decade or so. And now with treatments, early diagnosing is even more crucial.

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