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hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/26/2008 7:32 AM (GMT -7)   
Just found out that my boyfriend does not carry the cf gene from what they have tested him on but there is still a 7.2% chance that he could still carry a more rare shrain of the gene. Dose anyone else find this hard to get your head around . i do follow all this but boy is it confusing . I think that every child (in some countrys ) should be tested when they get the heal prick test when they are born . not only would it make people more aware if they or their children are carriers, but it could also detect a child who suffers from it at a young age. Dont know if this would be possible  idea  but its just a thought .

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/26/2008 3:39 PM (GMT -7)   
Hi Hazer, you're right it is SO confusing too get your head round. There are so many mutations with CF and such a high percentage that they cannot even test for! You'd think it would be so simple. They only have too look on Chromosome 7 to find the gene, and it's just a faulty CFTR protein that causes the problem. I dunno, guess there must be more too it lol.

In the UK every child now has a heel prick test done at birth, to try to catch people early. Unfortunately, it isn't all that accurate. However I'm guessing a full genetic sweep, or sweat test would be too costly. That's the only reason I can think of as too why those 2 tests aren't the primary testing tools, rather than just the heel prick.

My husband was tested, and isn't a carrier. Though we were told there is of course 1 in 280 chance that he could still be a carrier.


Hmmmmm, it does make me wonder sometimes, if money is being that well spent. I know they want a cure for us and stuff, hey we want a cure too. But I think I'd settle for them piling money into testing and treatment, which might make it seem less like we have CF. I don't think they're getting anywhere with this cure really, they've been promising it every 5 years since well before Iwas born, and in the meantime people are going undiagnosed, and without the right levels of care. That's my thoughts anyway.

Hmmmm, I'd love too work out my mind sometimes, how it manged to get from carriers too cure, I have no clue. There has too be a link somewhere!
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/27/2008 3:22 AM (GMT -7)   
Thats strange james my boy friend got tested , it came back clear but they told me 1 in 1000 chance he could still be a carrier. and i far as i know in Ireland cf testing is not encluded in the heal prick test. In England people suffering with cf have estamated 10 years longer life expectency then people in Ireland. You would think that considering Ireland with the highest percentage with people with cf in the world, there would be more care put into this but it seems we are still way behind. All I can say is thank god gypsy was born in 2002 cause things have to get better. Sometimes I wonder if I should just move to England if it ment better health care but it would be so hard to just get up and go not just for me but on gypsy aswell. To take her away from her friends and family would seem mean. I always seem to have questions going on in my head, like am I doing the right thing? Its hard to know . anyway how are you I hope your in good form and your keepin alright. I want to say thank you. Since I found this website it's making me think alot more about other people with cf and what there going through before I didnt have any contact with other people that had it. I could just talk to the doctuirs and nurses. Thank you for replying to me im sure you have enough to be dealing with, your a realy good person for taking time out off your life to do so. So the next time im in the pub im drinkin a pint for you :)

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/27/2008 1:09 PM (GMT -7)   
To be honest, spend a lot of time on here anyway, I like learning new things. Though I've been a bit quiter this week. Pseudomonas has taken over again, and noone wants too give me any antibiotics. Well, that's a small lie. They are giving me IV's on 8th Sept, though won't give me any orals too tide me over, because I refused too take one type (they have far too many side effects for my liking, more than IV's!) Haha, and thanks for the pint:D

I think you are doing a superb with Gypsy. CF care in England isn't excellant, it can still be improved a lot, my unit is awful, and I send most of the time crying about it, because I can't trust or understand them.
It's so nice that you are thinking about Gypsy's 'normal' life. Her friends and family and where she has grown up. My parents never did this. CF ruled my childhood, even though I was really good healthwise. She kept moving us schools, and I think that had a pretty huge impact on things, and the fact that I think now of only the bad things. I cannot recall good memories from my childhood, I only remember the heartache of having too leave my friends and make new ones because my mum thought it would be better for our health if we went to such and such a school.
I think you have got the balance right between the need too be normal and the need for the best care.

Now, I'm off to have a few more pints. Paul's cousin come round there watching a DVD, then were playing on our new Wii, he's brought some games with him we haven't played yet:)

Speak too you soon!
Gem x
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus

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