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What research are you most excited about?
In my 31 years, funding and research for CF have grown exponentially; these efforts have benefited the CF community tremendously. That said, there’s still plenty of work to be done.
Is there any research on the horizon that you are looking forward to? Is there an area or aspect of life with CF that you wish would be studied?
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4 Replies
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Hi William. I would like to see more research into the co-morbidities seen in pwCF. Into why pwCF get so many and why. Research into what the faulty CFTR is doing to the electrolytes within the body’s cells as I suspect abnormal electrolyte levels within cells may be the cause of many co-morbidities. I suspect Tricafta (TK) may be normalizing the intracellular electrolytes and in doing so causing apparent ‘side effects’. Headaches: appear similar to those seen with ‘salt poisoning’. If the faulty CFTR channel is causing intracellular Chloride levels to be high then balancing cations (one of which is Sodium) will be high. If TK causes an improved outflow of Chloride we can expect intracellular Chloride to lower and balancing cations to lower causing a reduction in intracellular salt. In other syndromes such as rapid changes in salt intake, reductions can produce quite severe neurological symptoms (headaches, twitching and convulsions, even death. Adrenal issues and hypokalemia are common in pwCF and probably result from abnormal intracellular electrolytes esp. Sodium & Potassium. High intracellular Calcium in the Parathyroids may contribute to the high levels of Osteoporosis seen in pwCF.
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Great question!
Research side: Persistent fatigue! I’m 27years M, with lung function over 90% on Trikafta. Very physically active, but sometimes, out of nowhere, fatigue becomes so strong, that I can’t do ANYTHING. I did all available labs, virus & bacteria tests. Nothing other than Pseudomonas. Really want to find out more about it. The next step in the process for me is to participate in the sleep study.
Drug development side: I can’t wait for a solution that will eradicate Pseudomonas. I participated in Phage Trails, and that was good. Now I can’t wait for it to be publicly released 🙂
How about you?
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I am looking forward to seeing research lead to developments for those with CF nonsense mutations and potential modulator therapy.
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Hopefully some real progress can be made within the next few years.
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