Am I right in assuming this? 3years ago I was told, by the Hospital, that IPF was NOT genetic. However recently, correspondence from the Hospital shows Familial PF.
Seemingly F P F is very rare - again I presume that all symptoms, prognosis etc are identical to I P F - just the genetic bit causes the rarity factor. Am I right? - anyone help. It would be great to communicate with a fellow I P F (or F P F) sufferer. Thanks
Dave B
Stilltruckin,
.Thanks very much for responding to my enquiry. I have read the article you referred me to and found it very interesting. (The part of which I could understand - some of it is very 'medical')
I really appreciate your consideration.
David B
I have familial pulmonary fibrosis,was diagnosed over 12 months ago,my mum died 3 years ago with IPF She was 83 ,as they have as yet not identified a gene that may be responsible it's called familial.It is still IPF ,I am being treated at Papworth hospital ,I live in Birmingham,I am at present on Pirfenidone and N A C,I also use ambulatory oxygen,I am due to see consultant at the end of this month,have been stable for the last 6 months.I am now 64 somewhat 20 years younger than the age my mum was diagnosed,nursed her through the illness,although little was understood 3 years ago,she was on Steroids,weakened her bones,she actually died after falling and breaking her hip.There is an excellent Facebook page for IPF ,we have a lot of members,and support each other,if you go to Pulmonary Fibrosis UK and click link for Facebook you can join the group,it's a closed group,I don't know where you live,but there are now several support groups around the country,you are welcome to message me anytime.Sooki.
Sooki
Than you so much for your helpful and interesting reply, it is much appreciated.
Your own circumstances considerably match my own. You have confirmed my belief that Familial PF is simply IPF witha genetic connection and treatment / prognosis etc is no different. This said, I wonder why I was told (3 years ago) by a much respected professor of Pulmonary diseases that IPF was not passed on genetically.
My Dad died 3 years ago too, his IPF induced a fall in the night then a fatal heart attack 30mins later. He was 83 also.
I am 68 and diagnosed 3.5yrs ago. I have to be honest and say that, during the last 3 months my breathlessness has worsened consierably. Due to see my Consultant in 10 days and don't know what to expect - probably a concentrator which I have been dodging (memories of my Dad and his plastic tubing everywhere!
As it stands today I have liquid oxygen - 2 flasks and a base unit plus 4 of the heavier flasks. My meds are identical to yours. My home and Hospital are in Nottingham and I am happy with my treatment with faith in my Consultant.
My GP is rubbish, hasn't a clue - asked me why I was using oxygen and then asked what IPF was????
I'm rambling Sooki so I will shut up, I will endeavour to join the facebook group and hope that you will keep in touch
Kind regards
David B
We do sound similar,my GP said I probably know more than he does,gps are not very clued up,most people have never heard of the disease,as they have not identified a gene ,they cannot say it's genetic,there is research going on,that's why it's called familial.i do not use Sooki on Facebook,we all tend to use our proper names,if you join message me through this site and I will tell you my name on Facebook,I am a bit paranoid about how much info is public on Facebook,as I said we are a closed group on Facebook,but we all suffer from the similar conditions there,there lots of chat,we all discuss our treatments etc,and loads of fundraising is going on mostly from people who have lost loved ones,they are trying to get the info out into the public domain.I am going on now,.Sooki.
Hi Sooki,
Having a bit of a freak after reading article. my hubby recently died of ipf and we have 5 adult kids and 2 grandkids. Think l need to contact my hubby's consultant. Glad of this knowledge but now scared and must not think the worse till need to.
Glad to have link to group, have tried to join but it just says pending.
Take carexx
Hi MRB554
I do not personally know the answer to this, but I wanted to wish you all the best of luck with finding the answers that you need.
Take care
Ken
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Another 1 from me
