Deltaf508 2 MUTATIONS?

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Deltaf508 2 MUTATIONS?

Postby joanna » Thu Jul 30, 2009 3:37 pm

I really need to speak to someone that has 2 deltaF508 mutations,doc says it can be the worst or more severe mutation?my baby is 6 months ,can anyone give me their story so I have some idea of what to expect??
Thanks
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Re: Deltaf508 2 MUTATIONS?

Postby willieb » Thu Jul 30, 2009 5:05 pm

i have deltaf508 x2 genes. just cause they say its worst doesnt mean it will effect u that bad me personally i was pretty alrite up to 2 years ago and iv gone down hill now. but iv talked to my cf nurse about this and she knows some pwcf with df508 genes that are alrite. cf effects different people different ways so just cause your baby has genes doesnt mean she will be sicker. dont worry to much
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Re: Deltaf508 2 MUTATIONS?

Postby joanna » Thu Jul 30, 2009 5:37 pm

thanx willie
i know each case is differant,im scared of the unknown,what age are you and when you'd been diagnosed?if thats not too personal?and what is cause for you going down hill in recent years?too many infections?
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Re: Deltaf508 2 MUTATIONS?

Postby willieb » Thu Jul 30, 2009 6:28 pm

i was diagnosed when i was born due to family history they checked me out straight away. im 25. am ya im just getting infection after infection lately and on ivs whole time so im waiting for transplant now.. im the worst case so dont be freaking out by hearin what im tellin ya..ask what ever u want i dont mind at all :D :D
your baby is after been born when theres alot more medicine and alot more better facilities so dont be worrying.
important thing is take day by day and worry about things when they happen, but most important thing is treat ur child like a normal child
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Re: Deltaf508 2 MUTATIONS?

Postby willieb » Thu Jul 30, 2009 6:29 pm

where is your child attending?
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Re: Deltaf508 2 MUTATIONS?

Postby Liam » Thu Jul 30, 2009 7:23 pm

My son is also double delta 508, he is now 10yo and is doing very well, knock on wood. He was also diagnosed at birth because he had MI. The med team at the time told us to feed him up because he would need the weight, now the problem is that the weight is too high!!!!!!!!!!!!!! (How do you win :?: ) As willie says you child is normal (albeit with CF) and should be treated as such. Dont become an over worring parent, they seem to scare Pidley! :lol: :wink:
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Re: Deltaf508 2 MUTATIONS?

Postby Pidley » Thu Jul 30, 2009 8:22 pm

many a sleepless night has been spent worrying about all the parents that worry to much :wink:


Hey Joanna
its good to have you with us, all be it under the circumstances, but still very glad to have u aboard

as willy pointed out, just cause docs say its the worst dosnt mean its going to end up been the worst for ur baby.
and also as willy said its a whole diffrent story these days, im 26 and like willy when we where growing up with cf we didnt have very much of anything compared to wat the lil tots have these days helping them along the way.
{lot of good points there willy :wink: }

ul find alot of help can be found on here so dont ever be afraid to ask a question either on the forum or by sending a private message to someone
and before long ul be helping out some new parents who are feeling the exact same way you are right now.
POWER TO THE CYSTICS
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Re: Deltaf508 2 MUTATIONS?

Postby willieb » Thu Jul 30, 2009 8:50 pm

Pidley wrote:{lot of good points there willy :wink: } .
pidley unfortunatly i av plenty of experience to be able give advice like urself :( :( and im still learnin :shock:
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Re: Deltaf508 2 MUTATIONS?

Postby Liam » Thu Jul 30, 2009 10:56 pm

Pidley wrote:many a sleepless night has been spent worrying about all the parents that worry to much :wink:



Pidley, keep telling you that u shouldnt be worrying about the parents!
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Re: Deltaf508 2 MUTATIONS?

Postby pinkfink9 » Fri Jul 31, 2009 1:02 am

hi joanne, congrats on finding cfireland. it took me years to hear about it but i find it an enormous comfort and sometimes abit of a laugh. :D
my teewcf has delta508 from each parent does that make her double delta? she is considered mild, she is 16 and has only had iv's since playing out in the snow this year while bunking out of school(transition year) and back in hosp now after a 4 day bender in wexford with mid night swims and drinking games!!! she says it was all worth it ( i did worry the whole time she was away pidley :/ ) i saw this link and fell in love with it the inspiration [for me] was overwhelming http://www.cfvoice.com/index.jsp so bounced into hosp this morning and dragged her around tynom park for an hour, !!
this web site is mega for any type of help and as a PARENT i can tell you you will worry almost all the time, you will probably cry alot and even blame your self BUT as your baby grows so will you, and even though my teen is 16 there have been so very many new discoveries in that time, all working towards better quality and longer life.
which hosp are you atending?
feel free to pm me anytime, and feel free to ask what might feel like the daftest questions someone will always have a good answer or a good idea.
The one thing we all have in common is we are all unique ;)
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Re: Deltaf508 2 MUTATIONS?

Postby joanna » Fri Jul 31, 2009 11:31 am

Thank you every one,just hearing all your words of wisdom have really made me choke up,I feel finally I am getting real life answers and not just the professional jargon the cf team give out.dont get me wrong they are great!!
Lilly is attending Limerick Regional, Dr Lenane from crumlin is joining the team in January ,im doing a fundraiser to buy him a paediatric broncholscope as apparently he is one of few docs who can preform this and HSE wont fund it,I have a signed golf club from Padraig Harrington along with other stuff so we will hold an auction night?ideas??

My cuz Ciara has cf and she is 26 so im following her progress with an eagle eye.She is doing great thank god and looks fabs.
Lilly had psuedo barters syndrome which is very rare but is cf related ,so we are just getting over that,she is only 6 months but it feels like an eternity ,so much has happened in such a short period.

she is great now thank god long may it last fingers and toes crossed :D
I have loads of questions but i think i've written enough now and she has just woken up so i'll get back to ye a little later,
thanks again to all of you for suppport i have a sneaky feeling this forum is going to my life line :D
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Re: Deltaf508 2 MUTATIONS?

Postby airulea » Fri Jul 31, 2009 11:40 am

Hi Joanna,

Just private messaged (PM) you. See link above - you have 1 new message.

Maria
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Re: Deltaf508 2 MUTATIONS?

Postby Matthew » Fri Jul 31, 2009 1:58 pm

Joanna,
all very good contributions from a great group of people who (unbeknowns to them)have all helped me and my wife consider some of the options and the best way forward since our son was first diagnosed.
Matthew has double DF508. Is now 2 years old and the doctors are happy with his progress. Speaking of which, we attend Crumin so we know Dr.Linnane who was dealing with all the paeds there. You will be in very good hands. In fact I'm now tempted to move the family to Limerick as we had no idea he was leaving. :cry:

feel free to PM me anytime if you'd like to know more,
Matthew's Dad.
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Re: Deltaf508 2 MUTATIONS?

Postby bob.narrow » Mon Aug 03, 2009 9:31 pm

Hey Joanna,

Welcome to the forum...

I'm a 27year old PWCF who also has two Delta F508 mutations (love that word makes me feel like a superhero!!!). I was also diagnosed at birth, I think it was due to complications with my stomach.

I would consider myself as living a fairly "normal" life, I socialize with friends (sometimes too much particularly at the annual conference!!!), I have hobbies and interests, I finished school, I gained a degree in Early Childhood Care and Education (3 years learning to play!!!), I worked for a number of years with Barnardos and at the moment I'm helping to set up a community After School service... I am also one of the laziest people you will ever meet (just ask Pipley!!) which has probably effected my life more then CF ever will :D :D

What I'm trying to say is that having CF (regardless of the mutations) does not mean that your child won't have a full and exciting life... That's not to say that it will be easy, but with hard work and with a bit of luck (and a whole lot of worry :D ) everything can (and hopefully will) work out. Try to be keep positive and as mentioned above try not to worry to much about the future and try and deal with the hurdles as or IF they arise...
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Re: Deltaf508 2 MUTATIONS?

Postby Liam » Mon Aug 03, 2009 10:11 pm

Well said bob.
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