Im crying my *** of here please help cystic fibrosis was discovered in my sister!


Question: my sister went for her nromal check up because she is pregnant. she gota call back and when she went to see the doctor she was told she has cystic fibrosis!! she is now 22 and didnt know that we are still alittle confused how she got it if my mom dont have it and acording to the research ive done both parent have to have it in order for my sister to had been born with it. is there any goooood center or nyc forrum website i can join to seek more help and info. in nyc that anyone here recomend for her to go...she has been going to presbyterian hospital , but still its good to get more then 1 option or one voice..please help and the main question i have aswell is what is the max life a person carrying this sickness can live up to??? ive only seen 40 - 41 max!


Answers: my sister went for her nromal check up because she is pregnant. she gota call back and when she went to see the doctor she was told she has cystic fibrosis!! she is now 22 and didnt know that we are still alittle confused how she got it if my mom dont have it and acording to the research ive done both parent have to have it in order for my sister to had been born with it. is there any goooood center or nyc forrum website i can join to seek more help and info. in nyc that anyone here recomend for her to go...she has been going to presbyterian hospital , but still its good to get more then 1 option or one voice..please help and the main question i have aswell is what is the max life a person carrying this sickness can live up to??? ive only seen 40 - 41 max!

ok first of all the person that said they were a nurse an never heard of someone being diagnosed at 22 is crazzyy.. I am living with cystic fibrosis and have been my whole life.. I am 18 I will be 19 sunday. anyways.... In order to have cystic fibrosis both parents have to have the GENE. both parents do NOT have to have cystic fibrosis.. you can carry the gene and not have cystic fibrosis and being diagnosed at 22 is normal you can be diagnosed at any age. and the answer to your main question is unknown because NOBODY CAN DETERMINE WHEN YOUR GOING TO DIE!! If your living with cystic fibrosis and get the proper education and help with that and take good care of your self you can live to be 100.. I just live life day by day and take good care of myself and pray to god to let me live another day!! thats all you can do hunn and tell your sister I said I wish her the best and I am praying for her.. If you would like to know more or your sister would you can email me at lil_bit**_89_2008@yahoo.com I would be glad to give out more information there and I can give you other ways of contacting me via phone or postal mail!!! I love to meet new people with cf.. I hope to eventually get a cf penpal!! Hope you find what your looking for!!

Hold UP!!! Your sister can NOT be 22 and Just be getting this diagnosis. It is a very debilitating and many kids never reach age 22 due to the respiratory problems it causes. Did she have genetic testing that stated she may carry a marker for this? Please call her back, because what you are telling us does not make sense. I am a nurse and have never ever heard of a person being diagnosed at age 22.

Experts have not yet found a cure for cystic fibrosis, but new and improved treatments help people who have cystic fibrosis live longer. The types of treatment your sister receives depends on what kinds of health problems the cystic fibrosis is causing and how her body responds to different types of treatment. Most people combine medicines, home treatment methods (including respiratory and nutritional therapies), and other specialized care to manage the disease.

Many advances have been made over the last few years in the diagnosis and treatment of CF. It is becoming more common for older kids and even adults to be diagnosed with CF. CF that runs in the family but has never been diagnosed before.

this article discusses the diagnosis of CF in young adults: http://www.medscape.com/viewarticle/5289...

http://www.patient.co.uk/showdoc/2700067... : Recently, some cases of cystic fibrosis have been diagnosed in adults who have relatively mild symptoms. This may be due to some mutations of the cystic fibrosis gene not being as 'faulty' as others. The handling of sodium and chloride may only be mildly affected in these cases.

also
http://www3.nbnet.nb.ca/normap/latediagn...

That said your sister needs to be under the care of a doctor specializing in CF, usually a pediatric pulmonologist (few adult doctors specialize in CF since until recently it was not realized that CF can be mild with few symptoms and exist in adults).

Check with your local hospital for support groups. and don't believe all the horror stories on the web.

ETA: if the baby's father also has the gene for CF then yes the baby is at risk for CF. If he has not had the test done he needs to ASAP. Whether or not she is considering termination based on results is not the issue, being prepared and ready to deal with CF in an infant and child is necessary for the wellbeing of both the child and the family.

ETA: you should be tested also to see if you have the gene.

Ok, calm down. It seems that your sister mainly has CF in her digestive system, otherwise she would have had problems a long time ago. Both of her parents (more like grandparents, it tends to skip a generation) had the bad genes (you are probably a carrier). Yes, her baby can have cf, only if the father is a carrier too. The median age of survival is 36.5, however a guy that married into my family who has CF is already 57, his doctors say he'll probably live to be 60 (he's slowly declining in health now). There are a lot of changes that your sister will need to make regarding her health, but it's going to help her live longer....so good luck, if you have any question about the disease e-mail me, I keep up to date on all the latest drug and therapies to help out the ladies at the CF foundation, I also help take care of my ten year old cousin who has CF





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