delta f508 and y1092x

melissa

New member
Hi eveyone, I'm new here and my husband and I are expecting our first child. We also just found out we are carriers for CF. I have the common delta f508 and he has a rare type y1092x. I can't find any information on the two genes together, and was curious if any of you have or know of someone who does have this. All our genetic counselor will tell us is this will be "classic cf", but from what I have read it seems like even two kids in a family can have different extremes of CF with the same genes. Any imput would be greatly appreciated. Thanks for your time, Melissa
 

Emily65Roses

New member
It seems you're asking what to expect if you have a child with those two CF genes? No one can tell you. CF changes so much from person to person, even brothers and sisters, cousins, etc (no matter the specific genes)... You never really know what to expect, and can only deal with what comes as it comes. I'm sorry that's no help. If you have any other questions, do ask them.
 

mammabettybear5

New member
hi i have 2 boys with cf,their 10 months apart and their cf is as diffrent as night and day,the youngest is very sick with the lungs and degestive,he is in the hospitol every couple of months and on 4 vest treatments a day and breathing and 16 dif meds,the oldest is fine never has problems with his cf just takes his meds and you would never know he has cf,cf varies so much between each person its hard to understand im still trying to and ive been fightting this thing for 13 years good luck to you ...betty
 

NoDayButToday

New member
Melissa,
Emily's right, CF varies much too much from person to person to know what a particular person's case will be like. Good luck and please come back with any other questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Thanks for your replies. Does anyone know if there is a place I can get info. on previous CF cases or maybe even meet someone that has these two genes. I was very frustrated when all I got from our counselor was "classic CF". From what I have read hear, that just seems the easy answer to give me, but not truly how our baby may possibly be. It could be extremely mild for all we know, and I would love to find others that have these two genes. (If it is even out there.) Thanks, Melissa
 

Emily65Roses

New member
I can only guess the frustration, but if the counselor gave you the answer "classic CF" I don't think it's to give you the easy answer. The fact is, there is no easy answer. The counselor has no more idea what kind of CF your child will have than you do. hey like to think they'll be able to guess, but really no one can until the child is in front of you, and showing symptoms. As far as talking to people, there are many here. I don't know about that specific gene (though I do have one Delta f508 and another unspecified rare mutation gene myself), but you can ask us just about anything, and I know someone (probably myself included) will get back to you. I have no idea how frustrating this must be for you, and as annoying as it is, no one is really going to be able to tell you how mild/severe your child's CF will be. <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Melissa, I've never personally tried this so it is just an idea. Maybe contact www.cff.org, they keep a database of all CFer and CF mutations by doctors/clinics who choose to list them. They could then possibly put you in contact with the doctors office without violating HIPPA. From there, you could leave your contact info so the doctors can pass that on to any patients who might be willing to contact you.
But, it's really important for you to realize that the mutations DO NOT define someone's CF. You can have siblings, or even twins-who will ovbiously have the EXACT same mutations and they will be effected differently. I know it's easier for me to tell you not to get wrapped around the mutations, but for your own sanity you really need to keep this in mind.

Julie (wife to Mark 24 w/CF)
 
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