Scared, just read ipf could be genetic, I've got 5 kids and 2 grandchildren?
ipf: Scared, just read ipf could be... - Lung Conditions C...
ipf
Written by
rockett777
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18 Replies
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oh
you know what dal last night i couldnt sleep cos of worrying over that
they are still testing me for things and im worried about my kids and granddaughter too x x
rockett777 in reply to
oh goodness, sick in my heart over this. How on earth will we cope with this.! By the way there is no piccie, just blank area. Bless you lovely.xxxxx
rockett777 in reply to
seen new post,mmmm. Still saying deleted
Hi Rockett, seems that they think there could be a genetic component to some cases as some cases of familial IPF have been identified. You may want to have a read of this previous post:healthunlocked.com/blf/post....
Best thing to do is to see if you can have an apt with your husband's specialist to discuss your family s circumstances. Best wishes to you love.xxx
Thanks Jenss,
I know its good to find out these things quickly. Is it really? particulary as its not got a good outcome. Right this second this news is unbearable. How on earth will any of the children cope, let alone me. Telling my self to get a grip, but my hubby didnt get diognosed till he was in his 60's. Yes l really need to get a grip and try and get hold of consultant tomorrow.
Hope you are well todayxxxxx
Hi Rockett it seems the familial form is very very rare.... Also in the earlier post someone said that a famous professor of IPF had said there is no genetic link.... So it seems no-one can predict whose children may or may not get IPF. It is the same with anything really: life is a risk: everyone can have a Down syndrome baby for example, but the vast majority don/t. (For Down syndrome there is a gentic test though, but as I said above I don/t think there is one for IPF). So please don't get freaked out by this suggestion that there may be a genetic link- I don't think that has been definitely established or identified. I think it is best to have the most up to date information and I suggest you discuss your worries with hubby s specialist who can hopefully explain the situation according to the most recent knowledge. Please try not to worry too much- there is no need to at this stage. Take care my lovely talk soonxxx.
PS and please let us know what the specialist has to say on this....
Bless you rocket777 and hope you get some really positive answers that help you deal with whatever the future throws at you. It must be scary but you have had some great comments on here. Take care and stay calm. Thinking of you. xxxx
I have one or co-morbidities and another 3 or 4 as my grandparents and parents had a similar thing my heart physio told me this just because say uncle bob had a heart murmur it does not mean I would get that same heart murmur but it could leave me predisposed to it. So yes IPF can be hereditary but all it basically means is that your kids will only be predisposed to it. More so if your partner does not have any lung disease
Hi rocket ive just read as I'm sure u have already that there is no scientific proof that ipf is genetic as familiar ipf is so rare. Does anyone else in the family from the past ever have it if not I wouldn't worry to much ( easy sed then done I know ) but was there anything pacific that caused ur husbands ipf like wood dust, asbestos is so it's less likely to be inherited, my 4 kids have been called up for tests ( they had their blood tests Monday ) for alpha 1 the doc sed they all have it cuz I do and mine is genetic it's more a case of what phenotype they are, I'm Z the worst one ( bloody typical ) but they could be an M which would make them carriers we have to wait for the results, but I know how u feel, I'm guilty, sad , angry, depressed not just because I have it but the fact I've passed it on. I hope u get the answers u need to hear. But I'm sure if it was genetic ur family members would of been informed when ur hubby was diagnosed. Hope ur well rocket this is not the kind of stress u need right now. Sending hugs . X Sonia x
rockett777 in reply to
hi Sonia my mind all over the place. sent you a pm, realising l not spoke to you for ages, then realised you answered what l asked in above message. SOOO sorry. Sending hugs back
in reply to rockett777
U can pm me any time rocket love hearing off u, always here if u want a chat, bout anything. X Sonia x
No wonder you are feeling scared sweetheart. Where did you read it? Hope it is good news when you get in touch with con. Meantime would it help, do you think, to speak to BLF - as you know they are doing quite a lot re ipf at present?
with love cx
l'm gonna try and talk to consultant tomorrow, if l cant speak to him, l will call BLF. Excuse me for this but lm proberbly getting my ............ in a twist for nothing. Just after loosing Hubby it freaked me out. Thanks cofdrop
It's quite understandable hun. When my con wanted me to have a sweat test to eliminate cf at the age of 60 after having bronchiectasis all my life, I wasn't bothered about myself as I thought if pos the cf must be mild if it's positive for me to get to 60, but I was soooooo concerned for my daughter and granddaughter as it could have had implications for them.
I have everything crossed for you sweetheart that all will be the news you are hoping for tomorrow. Please let us know. Hoping all goes well.
Love cx
Hi - some forms can be genetic, the genetic bit is more to do with having the tendency to develop it if a trigger is present than the fact that you will definitely develop it. There is a form which can run in families with cases of fibrosis, plus blood disorders in some, and premature greying in others (I know, sounds weird.....) My father in law died of fibrosis - he had worked with flour all his life being a baker. My husband died last year of it - he had been a heavy smoker. His cousin has it - due to asbestos exposure at work. My husband's sister died of aplastic anaemia, but his other sister and brother are OK; some of the family go grey early. I have 2 kids and 4 grandchildren - we are waiting to see if they think it is a form there is a genetic test for. Even if they test positive it does not mean they will necessarily develop it, but can be on the lookout for early symptoms etc. and get diagnosed early so that they can benefit from any advances in treatment whilst still at an early stage. On the other hand it can just come out of the blue with no family history - life's a lottery ! Take care all Gill
Hi Gill thanks for that, first l really am sad for your losses and really hopeful that the children dont develop it.
My husbands cause for ipf was unknown completley. Today l phoned the consultant secretary who said she will get con to contact me. So here's waiting and hoping.
Take lots of care.xxxx
Hi Rockett. Me too. I've got four Sons and nine Grandchildren. They seem to think men are more likely to get it. I'm not sure if my Husbands Father had it as reading his death certificate it was very similar. He died about 1960 and I don't believe they would have known what it was then. He also lost a brother in his early sixties. He had breathing problems as well. We have to hope they come up with a cure if any of our family get the disease. I have read that Edinburgh University and San Diego University have tested something on mice that seems to work. Let's hope it will work on humans.
Take care.
Mavary. X
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