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batemat
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/5/2008 2:25 PM (GMT -6)   
 Hello all. New to this... 
My wife and i just found out that we are both carriers of the delta F508.  We are obviously shocked... no real history of this in our family.  We are trying to determine what we are going to do, and wanted to get an idea about what to expect.  We went to a genetic counselor today who stated that delta F508 usually means the CF will be severe.  I have found scientific studies online that seem to contradict this statement.  any f508'ers out there who can give us some feedback on what to expect from a child that may be CF?  Are you happy?  Do you resent your parents?  We are torn on what the right thing to do here is......  looking for help and anyone who is willing to share with us.  thanks to all of you for being here.

Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 954
   Posted 11/5/2008 3:32 PM (GMT -6)   
Hi there,

I have double Df508 mutation. I'm 22 now, with a lung function of 80-90% which is good (according to my doc, though my lungs say otherwise.) I think if I had just CF, it wouldn't effect me as much as it does. But, I also have a few other conditions, one of them an undiagnosed muscle wasting condition. I think that's the thing that causes all the problems with my chest, because I get tired so easy, can't have half of the antibiotics because they make it worse, can't do much excercise.
Do I resent my parents for giving me CF-nope not at all. I only resent how I was brought up, and hate my mum for that-not because she gave me CF.

There is a lot of dispute it seems about whats the worst mutation of the cf gene to have. I'd say that noone is sure, so they keep saying different things until they find out what is right. I have friends who have had a hard life and been double DF508 sufferers, and died at aged 14 and 20. Another friend, has Double DF508, the same chest infections as me for only 2 years longer, yet he was similar health wise to be, until tis last year, when there has been a big plummet in his health-for no real reason-no extra infections, just the same as me. He's really poorley. But then my little brother-he has to have treatment every 1-2 years, can still play sports, work full-time and have a social life. He's double df508 too.

It's like with the life expectancy, that changes so often it's unreal. AS treatments get better, and more research is done, the average life expectancy of someone with CF extends.

Considering that 1 in 25 of the population is a carrier of CF, it's odd how many people actually have never heard of CF, and know noone in there family with it. Me and my brother are the first known in our family. I thinks it's to do with CF being relitively new, it was only even given a name in the 1900's. If you read the thread 'CF timeline' you will see what I mean.

Even though the gene is now known about, and where it is located on choromosome 7, they can still only test for a handful of the hundreds of different mutations of the gene.

I'm glad you came to ask for info. You have to be 100% certain that whatever you choose to do is right for you. Noone can tell you what you should or shouldn't do. Even if you had IVF and could get rid of the CF gene, who's to say that there isn't another genetic fault that can't yet be tested for. You can never be 100% with genetics, they are crazy things, they can be changed and effected by other genetics in the body, parts of faults can even be cancelled out, if there is something else that gets in the way, enviroment can change how genes react, anything really.

Just be certain before embarking on this adventure, that you know what you want and what to expect.
Good luck, and message back if you want help on anything.
Gem
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


batemat
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/5/2008 4:04 PM (GMT -6)   
thank you for the info. I'm constantly amazed at how the people on this forum are so optimistic and strong. My wife and I are having a hard enough time just knowing there is a 25% chance of our child having CF, so I can't imagine what it is like actually dealing with it.
as for the double Df508, I have read that the main cause for complications is either any one of a number of other genetics things going on inside you, mixed with what kinds of infections and environment you are exposed to. I'm not really sure how accurate all that is, but there it is.
Also, I like your use of "adventure."

diddles
Regular Member


Date Joined Mar 2007
Total Posts : 35
   Posted 1/12/2009 3:24 AM (GMT -6)   
Hi! I'm a kid (okay, I'm 20) with CF (delta F508 being my particular mutations), and I love my parents. They raised me well, if I may say so myself, and I have never blamed them for my condition because they couldn't have helped it any more than I could have. Of course, I wasn't diagnosed with Cf until I was about 16, so I don't know what it could be like growing up with this particular disease, but I was always a sickly child, and even then my childhood was pretty fantastic, in my opinion. I, personally, would say that I am very happy despite my disease. So, if you're worried about your child hating you, you may not want to have a child. CF is simply one of many complications that life can throw at you. Good luck. :)
-Deirdre

taty
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/12/2009 11:21 PM (GMT -6)   
I need help, my 5 year old son was just diagnosed with CF, he has had 2 sweat tests done, the result were over 60 the 2 times, I have been trying to get info about CF but I have not been lucky, my son does not really fit the description of a person with CF, he is actually a big boy.

He was first diagnosed with asthma, then this went out of control and he has been admited to the hospital several times, but he does not seem to have any growth or digestive problems. We are having our first care team meeting tomorrow, I do not know what to expect about all this, and on top of my son's CF, my other son was tested but we had no results, he does not sweat!!, he was also diagnosed with severe asthma and apnea, and resently started having problems with his digestive system.
Their doctor said that there is a high chance of him having CF as well, but we need to wait for his generic test results, since we were not lucky when his sweat tests were done. I'm so confused, I would have to have my two girls tested and my unborn child as well, I'm 22 weeks pregnant. I'm desperate, please help me.

Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 954
   Posted 1/13/2009 3:47 AM (GMT -6)   
Ok,
firstly CF is very original in each person-in that no 2 people are the same with it. Some only get some symptoms of things and noone knows why.
Both me and my brother are DF508, born to the same mum and Dad, yet he suffers a lot more with his digestive system and me with my chest. He's over 6ft now, I'm still 5ft4. He was bigger than my other sister (none-cf) when he was born, I was a lot smaller. I had early huge bowel problems, he suffered with early breathing problems and was born blue. We some how switched roles growing up I think with what we suffer most with.

A sweat test of 60 is very high, and almost a definate CF. Genetic testing would further tell you what genetic mutations he has. This wouldn't tell you how his CF is going to be growing up, though it could help guide you better.

I'm one of the rare ones with DF508 and a bug called Psuedomonas A Liverpool strain. This is meant to be the worst strain of bug, and it's impossible to get rid of from my lungs now, and has been for about 8 years. Yet- I'm still here with a high lung function, even though I suffer badly when the bug kicks into play, my lung function stays super high. My doctors are baffled as DF508, usually means you react badly to this bug and go down hill rapidly once you get it, with huge losses in lung function.

What I'm trying to show is that everyone with CF is different and there is no knowing how anyoone will react to the faulty gene.

Your 2 daughters should be tested definately. CF caught early, is much better than CF caught later.

I hope I've answered some of your questions, I will be back later to review what I've written and respond further. I'm just about to leave the house.
Chat soon
Gem
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, Azithromycin, Cirpofloxacin, Septrin, Omeprazole, Tobi Ineb 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 - then I get scared and run away.


taty
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/13/2009 3:44 PM (GMT -6)   
Thanks for your responce. We just came back from our first care team meeting, it was such a relieve and great help to hear them, don't take me wrong but it helps to know that I'm not alone in this battle. We meet a great doctor, and yes my daughters are going to be tested both ways, genetics and with the sweat test. My boys are both diagnosed with CF, but now we need to find the mututation, the doctor guess that it will not be D508 since our ethnic group is Hispanic. Please anyone with more info, I't would really help me to know more about CF, I want to help my boys to have a normal life and be as healthy as possible. Thank you and God bless you all.

Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 954
   Posted 1/16/2009 3:42 AM (GMT -6)   
I'm sorry, I didn't come back to you sooner-been so busy!

I am very glad that you're hppy with your care team, and especially the doctor.

I have no real advice as too keeping your family healthy, except maybe-just make sure they take all there meds and treatments properly. Especially with nebulisers, as how you breathe through them can change how much of the med is getting to the lungs.

Stay well, and keep us posted on how you're doing
Gemma:)
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, Azithromycin, Cirpofloxacin, Septrin, Omeprazole, Tobi Ineb 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 - then I get scared and run away.


Michaelas Mom
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 1/17/2009 8:12 PM (GMT -6)   
Hello,
 I dont get on here much but i try when i have some free and quiet time. so My daughter will be 4 in march and she was diagnosed with cf when she was 16 months old. She also has the double d508 gene. she is a very energetic happy little girl, you would never guess that she has cf. she has only been hospitalized 2 times for a clean out and 2 times for a bowel obstuction. it was a very scary thing for me when she first got diagnosed but we are excepting of it and treat her like our 2 year old son that is only a carrier of the cf gene. i wouldnt say that the d508 gene means your cf is going to be severe it is just a common gene that most have. If you have no other children then i say go for it try to have a baby and you will only have a 25% chance it has cf, i am so happy to have both my kids i would not change anything. my husband and i do her treatments every day and never miss one, she is so used to it, its just part of her daily rutine to do it. My daughter is on 4 nebulized meds (zopenex,pulmozyme,tobi,and pulmicourt) she also takes Pancrecarb ms-8 and ms16,periactin,singulair,zyrtec,prevacid,vitamax. but she does awesome she swallows all her pills whole. so to sum it up im letting you know if you decide to have kids they will be just fine even if they have cf.
 
any questions just ask
 
 melissa

Mother of Michaela 23 months W/CF and Tyler 2 Months W/O CF!!


Mommy123
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/28/2009 2:59 PM (GMT -6)   
Hello there! After reading these posts My husband and I do not feel so alone! We found out we were both delta F508 carriers when we were pregnant withour first child. We had a CVS done and found out she was a carrier. She is now 2 1/2 and such a joy to our lives. My husband and I really wanted more children and researched our options, despite many misgivings from other people about having another child. We met with various genetic counselors, considered our options, and decided that we would take our chances and TTC naturally. We became pregnant on the first try. We are currently awaiting the results of the amnio for the CF. We found out yesterday that the chromosomal tests were all good and that we are having a boy. We feel that any child is a miracle regardless. We just want to know before the baby is born so that we can be prepared the best we can to do the best for our baby boy. I was glad to see from the posts that a double delta F508 does not always mean "the most severe case" as we heard conflicting information from various doctors and genetic counselors. If possible, could any of you out there living with CF of parents of CF children have any words, information about CF, or advice, we would certainly appreciate it. :-)
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