Dr Tullis & CF stuff

In Uncategorized on July 14, 2012 at 10:45 pm

I recently came across a video that a fellow CFer made. It features Dr Elizabeth Tullis talking about CF.  I want to tell you all that this Doctor is not only an amazing physician, but she is a great speaker: incredibly wise, and is one MAJOR reason why I am still alive today. Visiting her would not only treat my symptoms, but it taught me about the illness, and in that way it treated my mind & all the questions I ever had (& that she has always been able to explain).  A whole team of Docs have contributed to my wellness, but this one woman kept me going for twenty years on lungs that were genetically coded to self destruct.  Anyhow, here is the video.  I think you’ll agree she’s wonderful.

What’s also remarkable about this video is that My Mom was in nursing training in the 1960s. Think how scared she would have been to have a child with CF given life expectancies back then.  Also,some of you may wonder, but as my new lungs won’t be troubled with the CF gene, I won’t benefit from the really cool research they are coming up with now, but it’s all a step in the right direction. Dr Tullis describes in the video how scientists have discovered how to open the salt channel that is at the root of all the Cf disease.  SALT transfer. It all comes down to salt. Sounds so simple, doesn’t it?

I remember the day when they discovered the CF “Gene”… we all prayed that cure would be around the corner.  Not quite. Though during the next three decades, coping mechanisms to treat symptoms did evolve extending life expectancy and quality of life of sufferers. The cure didn’t come in time for me, but transplants started to happen in the mid 1980s, & so that was my life raft.  But hopefully in future people with CF won’t NEED to have transplants.  Transplant, as we know, is such a delicate and volatile condition.  Luckily, CF research is FASCINATING to scientists… let’s hope we continue to fascinate them all the way to a cure!

Please do support to Canadian Cystic Fibrosis Foundation: compared to other charitable organizations, a resoundingly greater amount of it’s funds go towards research.

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