Hi, I'm writing this because I guess I have no other place to go. The issue with me is iam currently 36 weeks pregnant. I did test positive as a carrier for the deltaf508 gene, however my boyfriend was never tested. He does not have health insurance, so now I guess I'm getting really scared about the what ifs of this disease. I know nothing is predictable as that is life but I'm a preparer and would like to know if there are certain things I should have ready before the baby comes and not just the average things but things that will keep her healthy with cf. I have read and read and read about this disease and I'm not going to lie iam terrified. I do have a healthy four year old boy who does not have this but this is a different father and I was not informed about having this gene until this pregnancy. Iam terrified of even delivering her for fear of what's going to happen. There are so many horror stories around this and I'm starting to get very depressed.Thanks everyone ahead of time. I honestly just had to write it. It helped.
Scared
- Thread starter Breathe29
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Hi Breathe29,
Welcome to the site
The first thing is you don't know if your baby will be born with CF. Is there any possible way of that your boyfriend can be tested for carrier status? I am saying can he save some $$$ or borrow some money from someone to get tested to put your fears at ease? I assume you are far to long for an amnio? NO matter what the baby will be tested by law under the newborn screening. This is where they prick the babies foot with a little sample of blood and it is then sent to a lab. They measure for some elevated enzyme. I do not remember the name of it. Also, you can ask during the ultrasounds if your baby looks like they could have a possible obstruction on the ultrasound. I have heard of this. Sometimes it means nothing but its the first sign of that meconium illeus that a good amount of CFers are born with.
I suggest that you stay away from researching CF on google. Everyone's bad CF cases will be there. I want you to know if your son/daughter is born with CF it's not a death sentence at all. There are many on this site to prove that to you. I am one of those people. I am a 28 year old CFer male. I have a family! I am married, I have a daughter, I work full time, the list goes on and on. I want you to know also that all of us CFers are different. So we cannot compare your son/daughter to any story online!!!! This is a great day and age for CF as many new treatments are being researched. So keep your head high and remember you still don't even know if your little one has CF. But if you have more questions please message me or post comments on here. I will be happy to answer any and all.
I also have a blogsite where you can read about my CF life. I am truly living my dreams every day with CF
http://livingmydreamswithcf.blogspot.com/
John
Welcome to the site
The first thing is you don't know if your baby will be born with CF. Is there any possible way of that your boyfriend can be tested for carrier status? I am saying can he save some $$$ or borrow some money from someone to get tested to put your fears at ease? I assume you are far to long for an amnio? NO matter what the baby will be tested by law under the newborn screening. This is where they prick the babies foot with a little sample of blood and it is then sent to a lab. They measure for some elevated enzyme. I do not remember the name of it. Also, you can ask during the ultrasounds if your baby looks like they could have a possible obstruction on the ultrasound. I have heard of this. Sometimes it means nothing but its the first sign of that meconium illeus that a good amount of CFers are born with. I suggest that you stay away from researching CF on google. Everyone's bad CF cases will be there. I want you to know if your son/daughter is born with CF it's not a death sentence at all. There are many on this site to prove that to you. I am one of those people. I am a 28 year old CFer male. I have a family! I am married, I have a daughter, I work full time, the list goes on and on. I want you to know also that all of us CFers are different. So we cannot compare your son/daughter to any story online!!!! This is a great day and age for CF as many new treatments are being researched. So keep your head high and remember you still don't even know if your little one has CF. But if you have more questions please message me or post comments on here. I will be happy to answer any and all.
I also have a blogsite where you can read about my CF life. I am truly living my dreams every day with CF
http://livingmydreamswithcf.blogspot.com/
John
G
Guest
Guest
Get your facts first!! No panic!! Once you have your facts (i.e. specific gene mutations - especially once your little one is here) go to a CF Center. Nothing else - not a pediatrician, not the lung or asthma specialist - they do not know the details of CF. CF are the only true sources that can help you in all ways.
To prepare you: how about a 48 year old with CF, two kids, a full time job and a great life - that is me! Not every CF case is terrifying and there is LOTs of help and LOTS of resources available.
You will do fine!
To prepare you: how about a 48 year old with CF, two kids, a full time job and a great life - that is me! Not every CF case is terrifying and there is LOTs of help and LOTS of resources available.
You will do fine!
Dr. Joel Wallach states that Cystic Fibrosis is A SYNDROME not a disease!! He says the cause of this syndrome is a deficiency of Selenium, and also says to supplement flax oil. Watching this video lead me to purchasing Dr. Wallach's books... http://www.youtube.com/watch?v=RsNi1hUo0hA&feature=youtu.be If you'd like email me at "mentalst8@hotmail.com" and I will send you the PDF's I made taken from his books. What he says makes complete sense and I totally agree that it isn't a genetic disease, science only looks at the genetics but not what causes them... then science goes on to say that people are just carriers end of story, hogwash I say. This was interesting too, here is Dr. Wallach...http://www.youtube.com/watch?v=GDvJu2CV-pc. Preventing CF in the womb is the only cure there is outside of administering Selenium during the first few months as well is also a big help.
A lot of the reason why we aren't getting the nutrients we need is because of the way we are farming. Then after our bodies are deficient and start activating genomes to code for so called diseases like Cystic Fibrosis, which are nothing more than syndromes w/causes... the pharmaceutical companies start selling there wonder pills to attack the symptoms knowing it will be good business if the causes aren't ever addressed. After I found out this information after having CF for nearly 40years at this time last year, at first I was pissed but then after I cooled off I realized that people just want to make a buck. The sad truth is that it's nothing personal cause there are so many different diseases that can be healed or prevented outside of CF as well.
A lot of the reason why we aren't getting the nutrients we need is because of the way we are farming. Then after our bodies are deficient and start activating genomes to code for so called diseases like Cystic Fibrosis, which are nothing more than syndromes w/causes... the pharmaceutical companies start selling there wonder pills to attack the symptoms knowing it will be good business if the causes aren't ever addressed. After I found out this information after having CF for nearly 40years at this time last year, at first I was pissed but then after I cooled off I realized that people just want to make a buck. The sad truth is that it's nothing personal cause there are so many different diseases that can be healed or prevented outside of CF as well.
occupyjapan
New member
edit: double post
occupyjapan
New member
CFjeff73;bt520 said:Dr. Joel Wallach states that Cystic Fibrosis is A SYNDROME not a disease!! He says the cause of this syndrome is a deficiency of Selenium, and also says to supplement flax oil. Watching this video lead me to purchasing Dr. Wallach's books... http://www.youtube.com/watch?v=RsNi1hUo0hA&feature=youtu.be If you'd like email me at "mentalst8@hotmail.com" and I will send you the PDF's I made taken from his books. What he says makes complete sense and I totally agree that it isn't a genetic disease, science only looks at the genetics but not what causes them... then science goes on to say that people are just carriers end of story, hogwash I say. This was interesting too, here is Dr. Wallach...http://www.youtube.com/watch?v=GDvJu2CV-pc. Preventing CF in the womb is the only cure there is outside of administering Selenium during the first few months as well is also a big help.
A lot of the reason why we aren't getting the nutrients we need is because of the way we are farming. Then after our bodies are deficient and start activating genomes to code for so called diseases like Cystic Fibrosis, which are nothing more than syndromes w/causes... the pharmaceutical companies start selling there wonder pills to attack the symptoms knowing it will be good business if the causes aren't ever addressed. After I found out this information after having CF for nearly 40years at this time last year, at first I was pissed but then after I cooled off I realized that people just want to make a buck. The sad truth is that it's nothing personal cause there are so many different diseases that can be healed or prevented outside of CF as well.
Disclaimer to Jeff Warren's post above: Dr. Joel Wallach is a discredited, notorious quack who is a VETERINARIAN and who has absolutely no formal training in the field of pulmonary medicine, human medicine, Cystic Fibrosis, etc. Anything he has to say about anything beyond spaying and neutering your pet poodle should be taken with a grain of salt roughly the size of Mount Everest.