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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 2 replies, 2 voices, and was last updated 2 years ago by Kevin Schaefer.

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    • #13468
      Kevin Schaefer
      Keymaster

      Patients with SMA, particularly non-ambulatory ones, have a likelihood of experiencing kidney stones at some point in their lives. Due to the amount of time patients spend sitting in their wheelchairs, their urinary flow is more likely to be interrupted.

      http://sterlingmedicaladvice.com defines kidney stones as follows: “As fluid is drained in the kidneys and urine is formed, sometimes particles come together, solidify and form kidney stones.” Stones can vary in size and severity, and the more severe ones get stuck in various parts of the urinary tract and cause intense pain. Often these stones have to be removed surgically.

      As a patient with SMA Type II, I have had kidney stones several times during my late teens and early twenties. They can be quite painful, but there are ways to decrease the likelihood of you or someone you know from getting them. Please note that these are just tips based on my own experiences. Be sure to seek out a medical expert as well for professional advice.

      Consult With a Urologist: Whether or not you have dealt with kidney stones, the first step is to see a urologist. A urologist can analyze your urinary tract, measure how much liquid you’re taking in on a daily basis and make suggestions as a result. Even if you’ve never had kidney stones, it doesn’t hurt to see a urologist and talk about how you can continue to prevent stones and other urinary issues.

      Drink Plenty of Liquids: Maintaining a well-balanced liquid diet is a vital part of preventing kidney stones. Water, lemonade and even lime sodas have been recommended to me by my urologist, and you want to be sure to drink plenty of them on a daily basis.

      Urinate Regularly Throughout the Day: This should be obvious advice, but I’m continually amazed by how many SMA individuals try to “hold it” for as long as they can because going to the bathroom is too time-consuming. If that’s the case, then wear an external catheter or have someone help you with a urinal. Limiting how much you urinate during the day can lead to countless urinary issues later on.

      Have you dealt with kidney stones or other urinary issues before? What suggestions do you have? Join the discussion.

       

    • #13505
      Adnan Hafizovic
      Participant

      I have sand in kidneys.Luckily it is easier dealt with sand then with stones.I take pills Rowatinex and they helps me,of course I drink tea of cranberries.So in last two years I haven t any pains.

      • #13507
        Kevin Schaefer
        Keymaster

        That’s good Adnan. Yeah after the last time I got stones I started drinking a lot more on a daily basis. Fortunately I never had to have any surgically removed, and I hope to keep it that way.

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