Until two weeks ago I didn't even know anything about this disease. My son is 16 and his girlfriend is 17. I found out two weeks ago she has CF. I was stunned, because they have been together for a year and she was always a bubbly picture of health. She told me she had it, and that she knew she "would die from it". I didn't know what to say. I started educating myself on this disease and that didn't make me feel any better. I love this girl like my own daughter. She told me that night that she knows she needs to go to Children's Hospital, but her parents won't take her. She has been having stomach issues. My son says she has the vest, but doesn't use it and as far as he knows she doesn't take meds. Her mom is a drug addict and her dad is 70 and only takes her to the dr. when she isn't feeling well, but she doesn't say anything, because she doesn't want to inconvenience him. She worries more about him than herself. I have been doing research and hoping I could run across something that would help her, but since that day, she doesn't talk about it much and it is a hard subject to bring up. She said her mutation was a slow one and her uncle has CF and is 41 years old. I don't even think she takes a multi vitamin. I was thinking when she turned 18 she could at least take care of her own health, but it seems she isn't worrying about it right now. I am and as a mother it makes me sick. My son says everyone in the house smokes and her own mother buys her cigarettes. My son is always on her about smoking pot, which she only does occasionally, and now on this site I see that many people with CF smoke it. I just feel completely helpless. I feel I can't do anything to help. Someone mentions Child protective services, but with her mom's record...they have been involved many times. I hate the life expectancy I read about with this disease. I just want to hear something promising. I have told her she needs to stay as healthy as possible, because you never know when a cure is available. Thanks for any help.
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New to this disease. So many questions.
- Thread starter traywae
- Start date
First of all, the things you read online about CF are not always accurate. Each person with CF has a unique combination of issues, and it affects all of us differently. The best source of information on how CF affects us, is us as an individual. My boyfriend waited almost a year to tell his parents about my CF and that was because he wanted them to get to know me as a person and know that CF does not define me, I define it. I'm 31 and was diagnosed at 7. I didn't show symptoms for 6 years, mine is also a slow progressing one.
Anyone on this site can tell you that being a teenager with CF isn't a good time in our lives. I think it's safe to say almost all of us rebelled at some point and didn't do treatments or meds. The main reason is because at this point in our lives (including healthy people as well), we are trying to see where we fit in and we want to appear normal. Our daily routine is exhausting and to skip meds and feel what it's like to not do them is a great feeling. When it comes to smoking, that one thing we are NOT supposed to do. She may say that her CF is a slow progressing one, but smoking is speeding it up. Smoking pot may help her not feel her symptoms of her CF and will help her eat more, but anytime you smoke, you are damaging your lungs. There is an oral form that many of us take to help us eat and some use natural products. Smoking it is still kind of questionable in the CF community.
As far as your son's girlfriend is concerned, it really makes me sad that she doesn't have a good support system. There are some things you and your son can do to help her though. If possible, contact her uncle with CF and express your concern's and see if he has any advice since he might have more insight on the family situation. One thing I would suggest is trying to get her on social security. That way she is in control of her own health and she's not relying on her parents. Child services is also a route...her parent's should not be buying her cigarettes to smoke with a lung disease!!! They are hurting her more than they are helping her. You might be that person to get her the help she needs.
The biggest weapon in this situation you have is your son. If he really cares about her, which being together for a year says he does, he has a huge say in this. My parents use this to keep me in check from time to time. I know that at any point, if my boyfriend get sick of me not taking care of myself, he has every right to leave, because that's a legitimate excuse. I need to do everything in my power to stay healthy because I owe it to him to be the best I can be and show that I care about myself. I know that if the roles were reversed, I wouldn't stick around if I saw my boyfriend wasn't taking care of himself. With all the new drugs and things that are becoming available to us, she needs to be healthy in order to take them or else they won't work for her. I think it's important to point that out to him. One thing my boyfriend has done was to learn from me and do research on all the meds I have to take. He from time to time asks me if I took them or will remind me when I need to take one of my meds if it's getting close to that time. Like with meals he'll ask if I took my enzymes. He isn't nagging me about it, but it shows he cares about me and my health so I can't hold that against him. One last thing I can suggest is maybe having him or you sit down and explain how you are concerned about her health. That you really care about her and want to help her. Ask her to let her know if there is anything you can do to help.
Anyone on this site can tell you that being a teenager with CF isn't a good time in our lives. I think it's safe to say almost all of us rebelled at some point and didn't do treatments or meds. The main reason is because at this point in our lives (including healthy people as well), we are trying to see where we fit in and we want to appear normal. Our daily routine is exhausting and to skip meds and feel what it's like to not do them is a great feeling. When it comes to smoking, that one thing we are NOT supposed to do. She may say that her CF is a slow progressing one, but smoking is speeding it up. Smoking pot may help her not feel her symptoms of her CF and will help her eat more, but anytime you smoke, you are damaging your lungs. There is an oral form that many of us take to help us eat and some use natural products. Smoking it is still kind of questionable in the CF community.
As far as your son's girlfriend is concerned, it really makes me sad that she doesn't have a good support system. There are some things you and your son can do to help her though. If possible, contact her uncle with CF and express your concern's and see if he has any advice since he might have more insight on the family situation. One thing I would suggest is trying to get her on social security. That way she is in control of her own health and she's not relying on her parents. Child services is also a route...her parent's should not be buying her cigarettes to smoke with a lung disease!!! They are hurting her more than they are helping her. You might be that person to get her the help she needs.
The biggest weapon in this situation you have is your son. If he really cares about her, which being together for a year says he does, he has a huge say in this. My parents use this to keep me in check from time to time. I know that at any point, if my boyfriend get sick of me not taking care of myself, he has every right to leave, because that's a legitimate excuse. I need to do everything in my power to stay healthy because I owe it to him to be the best I can be and show that I care about myself. I know that if the roles were reversed, I wouldn't stick around if I saw my boyfriend wasn't taking care of himself. With all the new drugs and things that are becoming available to us, she needs to be healthy in order to take them or else they won't work for her. I think it's important to point that out to him. One thing my boyfriend has done was to learn from me and do research on all the meds I have to take. He from time to time asks me if I took them or will remind me when I need to take one of my meds if it's getting close to that time. Like with meals he'll ask if I took my enzymes. He isn't nagging me about it, but it shows he cares about me and my health so I can't hold that against him. One last thing I can suggest is maybe having him or you sit down and explain how you are concerned about her health. That you really care about her and want to help her. Ask her to let her know if there is anything you can do to help.
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Thank you for replying. My son said her dad is making her an appt. to check her enzymes(I believe..like I said, I don't know much about this) I heard (okay...eavesdropping...lol)my son talking to her last night on speaker phone, telling her she needed to quit smoking and stay on top of her treatments and she agreed with the treatments. She has been smoking since she was 6, but she is not allowed to smoke at my house. She told my son, don't tell your mom, and he said "You might as well know, people on her side of the family find out everything" lol. To call her family dysfunctional is an understatement and DFS knows her story all too well. Her mom was in a big drug bust last year and DFS has threatened to put her in foster care, but her dad said he could keep things under control in his house and keep her safe. He is 70 years old and hasn't done well at this. He works all day while her mom sits around and does drugs. Her brother is the same as the mom. Her older sister died of a drug overdose January 10, and she is so numb to this lifestyle, she just told me about it matter of factly, without much emotion. Her other older sister is in prison and is only 22 years old for 7 felony counts of drug manufacturing and distribution. Yes...dysfunctional is an understatement. She knows if she ever needs a place to go, she can always come to our house, but she is afraid to leave her dad, because he is older. My son has told her he will be done with her if she continues to smoke pot, but kind of defends her on the cigarettes, saying she has been smoking since she was 6. I feel if I could ever just talk with her about this subject, I might be able to help her. I think she needs to feel people love her and care about her, because I don't think she feels that at home. I ask my son about her lung function is and he said "It was 99%". I told him that was great, and then he said "Oh..sorry. I didn't mean to get your hopes up. That was when she had it check when she was 8 years old" She doesn't know what it is now. I will continue to educate myself and try to talk to her, without making it a sore subject for her, but it seems like a fine line.
Kudos to you for caring enough and being resourceful enough to visit us with your concerns and questions. All that's been said already is insightful and helpful. I can add here that I am a bit confused by some of what your sons girlfriend reports. Does she live in the United States? There are CF Centers set up all around the country in every state that specifically treat pediatric CFers. Hopefully she is going to one for her enzyme check and if she's not, I would suggest your son try to get her to one. I absolutely cannot imagine a CF Center pulmonologist not realizing that she is smoking and that she is not taking her other meds or letting her miss lung function testing since she was 8. CF Checkups are done 3 to 4 times a year, complete with pulmonary functions, blood testing, etc. And if a child is not being appropriately treated by her parents, I can't imagine a CF Team allowing that to escape social service reporting for medical neglect. So .... see what Center she is attending, or is in your area, and frankly if necessary report her case to social services yourself. Anonymously if you like. She is a child still. Her lack of medical treatment is criminal. Now I would add a caution here just based on experience as a possibility. Teens and children tend to be more prone to exaggeration for the attention it garners. Obviously she has had a very difficult life and family experience but the status of her treatments may be better than she is reporting. Of course you can't make that assumption, but there may be much more to this story. At a minimum, please find out the CF Center she visits and perhaps even your son or you might want to go with her to help ensure accurate reporting and full understanding of her treatment status. The Centers are listed on www.cff.org. https://www.cff.org/Locations/FindACareCenter/. You might even offer her a ride to save her aging father the difficulty! Let us know how she's doing.
Blessings
Blessings
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