more men than women with IPF

[maxer]

I have bronchiectasis and my specialist told me a year ago not to worry about the small amountof fibrosis I had cos more men than women get it but on the various sites I have been on there seem to be plenty of women with this dreadful condition. Does anyone what the real numbers are.

[cofdrop-UK]

I don't understand your specialis't reasoning - 'not to worry 'cos more men get it than women'. That's not a viable reason not to worry - if you've got it your gonna worry. Don't get him or her. Do you know what your respiratory consultant has a special interest in maxer?

Love C xxx

[maxer]

No I dont. I am due for another scan and an appointment with the consultant in March. When I was first diagnosed the doctor that read the scan results said I had bronchiectasis, COPD, and fibrosis. When I saw the consultant he said I didnt have COPD, the fibrosis was only a small area and I was a woman and only the bronchiectasis was to be bothered with. I wish they were straight with us, my imagination is far worse than anything they can tell me . Thanks cofdrop.

maxer xxx

[cofdrop-UK]

You can check out cons special interest online. Hope resp consultant has a special interest in cystic fibrosis or bronchiectasis as they are defo the best in treating bronchiectasis.

Good luck with your scan and I hope you get the answers you are looking for in March.

Love C xxx

[tanyamarie]

Hi maxer, ipf is on the increase and I find that very worrying indeed. What I also believe is that there are many people out there with ipf and do not know it, either because of a mis diagnosis or just don't know they have it yet as they have no symptoms.

I thought bronchiectasis was under the umberella of Pulmonary Fibrosis and not IPF and my understanding was that there are many treatments available for PF as opposed to IPF like my dad had. My dad had one consultant say it was impossible to have COPD and IPF and yet others say you can have both and I know people including dad who do have both. Also, one specialist said there was nothing that could be done for dad and another approved him for a transplant, all sadly too late.

Best advice I can give you is to have a second and maybe a third opinion until you are happy and confident that you are receiving the best care and treatment available.

[tanyamarie in reply to tanyamarie]

Just a little note, I found a photo of my dad with my 6 year old when she was a baby and yuou can clearly see he has IPF in the photo as he had clubbing of his fingers and nails and none of us knew. He had no other symptoms at all.

[Hidden]

Hi maxer, sorry i can't answer your question, just wanted to say Hello and i hope you are keeping well,

rose xxx

[maxer]

I am feeling well thanks rose and its good to see you on here. I am going to Portsmouth on Tuesday to visit my great grandchildren and that has really bucked me up. Keep strong.

maxerx

[buddygirl]

I thought it seemed to be mainly men with IPF but over the last four months or so have changed my mind to be mixed. Face book have a IPF website Pulmonary Fibrosis UK I was put on to by Alan Wheldon (not sure of the spelling of the surname) but Alan has put a feature in Bella this week on IPF to try and bring awareness of this disease. As Tanyamarie says its there for ages before it before it shows its self. I can remember getting out of bed to go to the loo when my daughter was very young and puff for ages getting back to bed, not realising what it was. I spent years thinking I was always having panic attacks blaming stress. I asked my mum today if anyone In the family had it but she's having memory problems so not much help, could it be genetic, there are many ideas as to how I have it and it will never be known, it's very frightening to live with now and there is no cure.