first symptoms and diagnosis of CF at age 73

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adeptone777

Guest
The mutation dectected is "p. Phe508del (also commonly known as Delta F508) . . . is the most commmon mutation worldwide".
We are in the process of contacting and hopefully getting referrals from CHOC, Dr. Belkin at the CF Center at Cottage Hospital in Santa Barbara, and National Jewish. Much gratitude to all who have responded and been so hepful. We feel so blessed to have found this forum. It not only been an education, but a great source of comfort to connect with everone.
 
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bharison

Member
Dr. Belkin is great. He is why I am still here. I just had my 67th birthday. Healthier now than I have been in many years. I am also very active. Swimming laps is what kept me going for years, without any of the CF treatments. Now with the CF treatments I am doing well. No pneumonia in 2.5 years. I used to have it every year and often more than once.

I am DF508 and R117H

If I can help in any way let me know.
 
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sueharris269

New member
adeptone777 said:
Cannot find a pulmonologist with experience in treating the older patient. Any suggestions where to look. Would like hear from anyone with similar experience.
Click to expand...

My mom, who is now 80, was diagnosed with CF at age 75. She lives in CT but sees a very good pulmonologist, a Dr. Behar in Westchester County, NY. She is pancreatic sufficient. She had been treated as if she had asthma her whole life until my son was born and diagnosed with CF ddF508. He is now 16 and just came out of his 1st hospitalization since diagnoses at 1.5 years old. He is not pancreatic sufficient.
 
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dcox13

New member
I have CF, delta F508. I am 60 years old. I agree find a. Lose CF center. They will be your lifeline. Would love to chat more. Take care.
 
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