@timb
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W. Hoh posted an update 3 weeks, 3 days ago
@timb
A similar thing happened with my brother-in-law. He was 45 years old and the thinking was that people are either diagnosed by age 10 or they don’t have c f. I had to really push his doctor to test him.Double Delta f508
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We do have a lot of education to do. So much bad information about CF is out and about in the general medical population. This is just one piece. To all pwCF, their families and friends – keep teaching!
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Jenny Livingston replied to the topic We're back! Happy New Year! in the forum Adults With Cystic Fibrosis 1 year, 4 months ago
@johnfschroeder I am very interested in CRISPR research! It’s so intriguing and, as you said, there is so much hope on the horizon. I’ve now heard from several people that Breath of Salt is a worthwhile read; I may need to get my hands on it!
@timb The news about Trikafta is truly exciting! I am so happy it’s been expanded to include Reva’s…[Read more]
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Jenny Livingston replied to the topic Dating and relationships: When do you mention CF? in the forum Cystic Fibrosis and Dating/Relationships 1 year, 7 months ago
@jpaul I concur that if health is a “problem” in a relationship, it’s more likely a symptom of the real problem. In my previous marriage, my partner’s struggles with my health were indicative of much deeper issues in the relationship. You’re also completely right when you talk about feelings of inferiority. For too long, I tolerated behavior I…[Read more]