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Karen’s Story (SMA Syndrome)

Purple RibbonSo, seven years ago, I had lap band. I will not deny that, since then, I have still battled anorexia and bulimia. I have maintained the same weight for six years, though I can also say that, for the last three to four years, I’ve experienced this excruciating abdominal pain, which I thought was gas all along.

Well, this past Super Bowl, Feb. 2016, I endured a pain that was so unbearable, I crawled back and forth from couch to bathroom, trying to vomit. My stomach was so distended, the docs told me it was going to pop. After allowing them to insert an NG tube, I put out two liters of stomach contents. I never knew for the last three to four years that I was experiencing the symptoms of SMA syndrome.

We, as one, need to help each other as we suffer an illness no one understands. This syndrome is so rare as well. I will be seeing a specialist March 4th. Wish me luck.

New York
Submitted 02/17/2016

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Brigitte Estelle Gaudreault

    Dear Karen,
    Keeping you in my prayers !!

    From Canada, wishing you the bestest luck !!
    Brigitte Estelle

  2. Camilyn Morrison

    Hi! Would love to speak to you! I was just diagnosed last week with SMA Syndrome had it for 7 years no one knew -had every work up colonoscopy endoscopy, full hysterectomy, sits marker small bowell follow through, flex sig, ct, Mri, sits marker, and so on.. lap, exp surgery, barium X-ray showed twisted colon baffled several state specialists sent to mayo clinic after all these procedures and 4 surgeries and trip to mayo clinic they finally diagnosed me. I am almost 5’8 97 lbs.. Can’t find lot of info about it. No anorexia but was accused of it just stabbing excruciating pain like someone sawing my ribs I can only only consume liquids..came from out of nowhere you’re story sounds inspiring ! If you’re willing to chat I’d really really appreciate it! Best to you! Want to help others! Best to you!

    • Brianna

      You had surgeries for sma? Has it helped at all?

    • Sondra

      I know this is an old posting but was just diagnosed with SMA and would love to get advice from someone who has already been diagnosed!

  3. Brianna

    I have SMA syndrome too. I’ve been to a specialist and there wasn’t much they could do for me only surgery. They recommend weight gain by consuming those shakes and drinks that help you gain. I’ve gained around 10 pounds which has helped but it’s still pretty bad. I hate eating. I get nervous to eat because I don’t want to throw up. I’m in my twenties and I’m starting to get nervous about pregnancy. Do you think is having this syndrome won’t allow us to have kids? Because I’ve been thinking about how the baby pushes on all your organs and squeezes them together. Do you have any information about that?


  4. Amy

    My daughter has just been diagnosed with SMA. She is 17 yo, 5’6″ and 105lbs (down from 135lbs). She was very sick with several viruses and mono in Nov, during this time she lost an extreme amount of weight. The symptoms became excruciating in January with no answers until she was hospitalized with what we thought was a virus in July. She had a feeding tube for 21/2weeks but couldn’t tolerate anything they put through the tube. Now she is just trying to eat even though the pain is unbearable. She will have 1 good for every 7 bad. As a mom I am so frustrated because there doesn’t seem to be anything I can do to help her feel better. The doctors don’t seem to be able to do anything for her. Is there anything that you all have found to help relieve the stabbing pain or nausea, even for a little while?

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