Has anyone/someone they know been diagnosed with cystic fibrosis as an adult?

[LadyBiscuit]

My sister has had a DX of CF this week. I was trying to be all brave and 'oh this is fine and I will carry on as normal' but actually I am not coping at all well with this so I could really do with stories/advice/patting on the arm etc

She is 43, has had a long history of lung problems (they always thought she had asthma until last summer) and I can't think what else to say really.

But I am falling apart. She is my baby sister and I have loved and protected her for so long I can't bear the idea that she is going to die.

Any words of wisdom, pull yourself together, anything really. I can't stop crying which is pathetic

ps sorry this is so incoherent. I am a wet blubbing mess

You poor thing. That is terrible. I don't have any words of wisdom but I don't just want to read this and leave you.

All I would say is, how lucky your sister is to have a big sister like you. You obviously love her a lot.

My ex-dh was diagnosed as an adult after similar history of lung problems. It's terrifying, I know, but I did so much research about it, and life expectancy when diagnosed as an adult is almost the same as normal - it's likely that her problems are mainly to do with her lungs rather than digestive system, which is what makes all the difference early on. There are probably many people out there living long and healthy lives who will never be diagnosed. The variation of cf genes means there are severe cases which are obvious from a newborn's failure to thrive, and much more subtle cases like your sister and my ex-dh.

My ex-dh got amazing care after his dx (at bristol hospital), and every infection is treated so carefully. He is now remarkably healthy, although after dx he chose an outdoor lifestyle (ski instructor), so that he rarely comes into contact with colds and flu etc.

There may also be an impact on you in that you may wish to be tested as you have a 1 in 2 chance of being a carrier of the gene.

I just wanted to reassure you that although cf is a terrifying and awful disease, the worst impact is in childhood, and in your sister's case, hopefully knowledge will only be a positive thing and will enable her to live a more healthy and long life. Find out all you can and don't too scared. I hope your sister stays well.

A University friend was diagnosed in her early 20s. The doctors seemed quite positive that as nothing had been suspected up to that point she had a fairly mild form of the disease.

She had children earlier than she might have, but is (as far as I know as we have lost touch but still have mutual friends so I would know if the worst happened) ok most of the time and is now 40.

Thank you so much for your posts, really reassuring. My sister is going to join a gym (she's been so unwell over the past nine months while they were trying to get various infections under control that she has not been well enough to exercise but is now on the treadmill every day at the hospital).

I and my other sister are going to be tested to see if we're carriers. I'm fairly sure I don't have it but I need to know if I'm a carrier as obviously that will impact on my DC too.

Unfortunately my sister is one of those people who doesn't like to know information whereas I want to know everything! So in a way I'm quite pleased that I will get a chance to speak to the consultant. Narmanda - that's very sweet of you. I'm not sure my sister always feels like that though - I think I irritate her sometimes with my over-enthusiasm for looking after her

Ladybiscuit, that's great that your sister is going to exercise, as that's the key. If her care team is good, they will get a personal trainer and a gym membership for her on prescription.

If your DCs also turn out to be carriers, then their partners should be tested before they have children. But I am sure you will be well counselled about all of this.

Best of luck x

Thanks missjackson - that's very helpful info as her DH is not that keen on forking out for gym membership particularly as she can't work very much any more so they've lost most of her income She has been assigned a social worker apparently who she is going to meet after the weekend - hopefully she will be able to support her with getting some support if she can't work (or helping her to find a job that she can do)

She should also look into disability benefit, which is awarded regardless of income and work. It pays for things like taxis when she might be sick and unable to walk far. She could also get a disability badge so that she can park near to shops etc when she is sick. Hopefully the social worker will be fully clued up. The problem is that as I am sure you can appreciate, adults with cf often seem like normal healthy people, but when they do have episodes of sickness (like a cold that turns into full blown bronchitis) then it becomes very difficult for them to live normal lives for that period, so they are entitled to as much support as possible imo.