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    • #29163
      DeAnn R
      Keymaster

      Finding the right doctor is an important task. After my pcp retired in November I made the switch. Someone else I know is also looking for a new primary doctor. She’s looking for someone who is experienced with her condition. I on the other hand want someone who’s willing to learn. Sometimes I find the experts aren’t willing to look at me as an individual. So my question to you is would you rather have a doctor who’s an expert with your condition or one that might not be familiar with it but willing to learn?

    • #29172
      Micaela MacDougall
      Participant

      For minor, everyday issues, I enjoy working with my GP, who doesn’t have much experience with SMA, but is eager to learn and try new things.  For anything serious, especially inpatient care, I make sure that I am connected to my team of experts at Johns Hopkins, who know my body better than I do.

      Interestingly, Deann, I’ve had the opposite experience as you.  I recently had to change gynecologists because my previous (non-expert) doctor didn’t have a hoyer lift and wasn’t interested to searching for a better solution than the nurse manually lifting me.  My new doctor isn’t an expert in SMA, but she has a lot of patients with disabilities, and that showed in how much she treated me like an individual, making sure I felt like I was in charge of my care.  Every single “expert” I’ve worked with at Hopkins, from doctor to therapist, has made me feel more seen as an individual, because their expertise gives them a high level of insight into my life.

      • #29174
        DeAnn R
        Keymaster

        Thanks for sharing. This is exactly why I ask. I love hearing different perspectives. I’m glad to hear you’ve had a positive experience with your team of docs. Follow-up question for you. How did you go about finding a gynecologist that was more experienced with individuals who have disabilities?

        • #29179
          Micaela MacDougall
          Participant

          It was definitely a difficult process!  In the end, I was able to contact my neurologist who specializes in SMA, and she referred me to a gynecologist in the same hospital network.  Honestly, I feel so lucky to live within an hour of Johns Hopkins – besides their team of SMA experts, the entire staff has so much experience with patients who have unique needs.  In a way, it’s a shame that I have to go to a world-renowned hospital network to find a gynecologist that has a hoyer lift, but I’m grateful that that option is open to me.

    • #29177
      Alyssa Silva
      Keymaster

      I’d rather have someone who’s experienced with SMA. I deal with medical anxiety, so I have peace of mind when I know my doctors are well versed in my disease.

    • #29178
      Yvette Haas
      Participant

      I like someone who has experience, but is also willing to do things differently than they are used to. For a GP, I can definitely handle teaching them what they need to know about SMA, but I prefer to have a pulmonologist with SMA experience. Either way, though, I tend to go a bit out of the box, so I guess personality is the most important thing for me. If they are not willing to listen and adapt, my anxiety skyrockets.

    • #29181
      Anna
      Participant

      I made sure I got the most experienced in SMA neurologist I could find and then he referred me to the rest of my medical team who also are familiar with SMA. My GP doesn’t have any SMA experience, but he’s so perceptive that he picks up everything at once. My gynecologist is not as perceptive, but he’s always willing to speak with my other doctors if necessary. So, I guess it’s a combination of various factors that make the ideal SMA doctor, as long as they’re not patronizing. This is a deal breaker for me!

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