Familial Interstitial Pneumonia

I have recently been diagnosed with the above, I'm 28 and had it since I was 14 if not longer but it has only just been detected as I was extremely breathless while pregnant. Does anyone else have this or have any information, my consultant doesn't know a huge amount as supposedly it's pretty rare and there's next to no information on the Internet!

9 Replies

  • I can't help specifically but there are people here with a huge range of lung diseases. And someone is very likely to pop up with some information and help. Even if that does not happen this is a very friendly, supportive group and there may be general comments that fit your situation. The BLF helpline is excellent so why not try phoning them?

    All the best and let us know what you find out,

    K x

  • Hello Derby. Isn't it a type of ILD, interstitial lung disease? I don't have it but have heard of ILD/IPF. Poor you, who else in your family has it? There are a number of specialist centres, the one at the Brompton is the largest in Europe so has lots of research going on rbht.nhs.uk/healthprofessio... You're so young, you need the very best treatment, so I think you should get referral to one of these centres asap. I think there's a list here actionpulmonaryfibrosis.org...

  • Hi Hanne62, yes it is a type ILD but there are so many and so little information about this particular type I was hoping someone on here might have it too! I'm due to be going to Newcastle for more tests and think my consultant is in contact with a specialist from Brompton, I stay in the Highlands, so hopefully they are doing as much as they can. I will ask about being referred to one of these centres at my next appointment, thank you!

  • Is that the Freeman at Newcastle? I've heard great things of it. Though you'd think there'd be a unit in Scotland. I presume you know about chss.org.uk They have a telephone helpline where you might get more info

  • I think it is yes, I'm primarily going to see if I'll be eligible for a transplant but hopefully they'll have more information on my condition. My consultant is hoping that I will be eligible but that I'm too well at the moment to have the transplant. I haven't really looked into any helplines I have been pretty confident my consultant has given me all the information he can, although it's limited, just hoping to find someone with the same type of ILD.

  • Usaly if you cant find out you brake words down Familial I think means its genetic.

    Ask lung doctor to do dna test usaly it uncovers cause

    As anyone else in family got it

    Hope this clears things up for your doctor


  • No, no one else in my family had/has any problems. The only report I found online was about a family that had it, same symptoms but doesn't seem to be genetic

  • The say its biological guess thats other word for genetic.

    I would get dna test done as would hellp with any treatment.

  • Get yr consultant to refer you to the Brompton Hospital as you are so young, they have the latest tests and treatment & are the center of excellence for this.

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