[Stacy Davenport]

Hi All,

Thank you Gina Burke for starting this thread and to all of you who’ve provided  so much useful information to those of us left wondering if there is a genetic link to more than one close family member who has been diagnosed with IPF.

Today, I was able to speak to my UK Dr regarding genetic testing for this horrible disease after recently losing my 83 yr old mother to IPF and emphizema. She was diagnosed 4 1/2 years ago in St. Louis, MO. She spent her last year and weeks in palliative and hospice care in a care home.

Her brothers both had been diagnosed with IPF. One brother who was a heavy smoker died at 74. The other brother a non-smoker was diagnosed at 63 and was fortunate enough to receive a lung transplant a few years ago at 65. He seems to be thriving although covid is a major concern obvs.

I feel fairly confident that my Dr will be able to provide a professional source to discuss genetic testing with, at least. In the meantime, I’m wondering if they are any readers here who have any information or experience on what is offered by way of testing in the UK and how it is done on the NHS or other. Thank you

 

 

[Stacy Davenport]

Hi Debbie, with so many stories very similar to are and others who have posted here suppose we need to do what we can to call attention to  this horrible disease, especially if genetics are involved which I believe they are. It’s not good enough to be diagnosed and put on a waiting list eventually if one is deemed an appropriate recipient of someone’s donated lungs.

 

[Stacy Davenport]

I hear you Steven. My 83 yr-old mother continued to pass the walking and breathing tests after 4 years of horrible symptoms before they allowed her to have oxygen. which after, helped quite considerably. To be fair she wasn’t actually pushing pulmonologist for it as she thought she didn’t need it. she was Stubborn and thought it would be more of a bother.

[Stacy Davenport]

Thanks Bruce. Good to know.

[Stacy Davenport]

Thank you, Will. I’ve my fingers crossed for you and am sending some positive vibes in hopes for a successful lung transplant.

 

[Stacy Davenport]

Hi Regina, thanks for letting us know about 23 & me research. I will look into it.