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    • #14799
      Bailey Vincent
      Keymaster

      I wrote a column today that talks about “fringe science“. More specifically, it talks about more experimental procedures that aren’t yet covered by insurance, including stem cell therapy and phage therapy. I have heard positive things from many friends with CF, and had my own positive experience myself.

      Still, sometimes when people suggest more holistic options (like bone broth and celery juice) I roll my eyes. The amount of Medical Medium messages in my DMS lately is enormous (I’m not sure why it’s increasing so readily but, for some reason, people are convinced this will cure me).

      Question: What is the largest leap you ever taken for science or for your health? Has any risk every paid off?

    • #14802
      Jenny Livingston
      Keymaster

      Once, to appease my mother, I used something called a Rife machine — something that emits radio waves at high frequencies to “heal” the body. I feel pretty comfortable saying it didn’t cure me. Hah! My early years were full of experiments like this, to no avail.

      I regularly participate in clinical trials, which some people believe are too risky. I’ve even had family members question how in the world I feel comfortable being a “guinea pig.” But I’m a huge fan of clinical research! I love helping in the advancement of science and have never felt like my safety or well-being is at risk.

    • #14808
      Christina Kolassa
      Participant

      My CF kids will grow up thinking I was a nut because of all the things I was willing to try. We’ve tried Colloidal Silver, low level laser therapy, muscle testing, acupuncture, drum lessons and anything that I thought wouldn’t hurt them. My thought was “nothing we know of now has worked so why not try things outside the norm”. I did everything I could to keep my kids away from the harmful effects of antibiotics. On the other hand, or should I say the Western side, we participate in ALL clinical trials we qualify for. As a matter of fact my daughter, Sarah, just asked me if there were any trials she could be part of because she wants to use the money to buy a hanging chair for her room. Maybe not the Nobelist motivation, but she’s 12! Because of my crazy out of the box efforts, my son Will, was on of the 400 participants in the trial for Trikafta. I think crazy moms, like me, are driving this effort and I think we’re going to succeed!

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