Extremely rare lung condition - not much info available - would love to contact someone else with this condition.
anyone out there with the condition m... - Lung Conditions C...
anyone out there with the condition my husband was diagnosed with two years ago- Idiopathic Pulmonary Haemosiderosis ? We feel very alone.
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15 Replies
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Coming on here is a good thing to do. I am afraid I cant give information but recommend you to click on the red balloon, right hand top of page. They should be able to help you or direct you to a help line. Wonder also about googling it - uk sites are the ones I am most familiar with. All the very best from annieseed
If you need specific information or just a chat try the BLF helpline - 03000 030 555 - Mon to Fri - 9 - 5. They are very helpful.
there are sites on the internet just type your title
Thanks to all of you who have replied -we have medical knowledge about Mike's IPH ( there isn't a lot available as it is such a rare condition -his consultant thinks that he is the only person in Wales with it !! ) What we would really like is contact with someone else who has it or knows someone who has .
Toci in reply to
Try your local Breathe Easy groups (BLF can advise where to find one). There may be someone who can help.
I would pose your question every so often Helen08. There may just be someone on this site but people dont look in every day.
All the best to you and your husband, peeg
I have IPF, would be nice,if that is the right phase! To communicate with some one else through this journey with this problem, my name is Alice,I live inHalifax, if you would like totalk,
I'm happy to listen and help if I can, take are, Alice
Thanks Toci - already belong to our local Breathe Easy Group - Fantastic little group - great support . Other than that we at a loss - when we were given diagnosis Consultant bemused too - only ever come across six cases in his career - it's usually found in little girls of Scandinavian origin !! Mike had his 70th birthday whilst in intensive care after the biopsy which confirmed his diagnosis went horribly wrong . Obviously he is still here, and we are living with it, but would love to be able to contact someone who knows something from first hand experience .
Hi Helen,
Sorry can't help with that particular disease as I have IPF and IPPFE but if you are on Facebook if you put Idiopathic Pulmonary Haemosiderosis into the search bar it brings up a page about that. 38 people have so far "liked" that page and if you click "38 people liked this" it will show you a list of the people. You could then request that they accept you as a "friend" on Facebook and you could perhaps then communicate with them. Hope that helps. You can always talk to us Idiopathic Pulmonary Fibrosis people on here though. We don't bite - honestly! 
Hi Helen, I was diagnosed with IPF 9 years ago. ( now 71).Exercise is best way of slowing condition down, Went to local gym using walker and bike for 30 minutes light use. Found local hospital doing pulmonary rehab courses ( highly recomended ) and keeping positive. worked up to last year but still keep my mind busy. I am now on oxygen to help me breathe but still enjoying family life with my children and grandchildren. IMPORTANT. Keep a positive mind, join nearest group, a great help....Good Luck
Thanks again to all who have replied to my question re. information on my husband's condition - appreciate all the advice but would still like to hear from anyone of who has experience IPH .
Mommy1st in reply to
Hi, my son was diagnosed with IPH 2 years ago at age 3. We have been battling this thing since.. I wouldn't mind conversing with someone else dealing with our condition being that it is so rare.
Hi Mommy1st -Great to hear from you although hate the circumstances . Would love to contact you ( we don't do Facebook but could phone / Skype or e mail ) .-please get back to me ,Helen /Grandma .
Mommy1st in reply to
Hey you can email me anytime @ tameika178@gmail.com! Would be great to have someone else to talk to that can really understand what im going through.. Can't wait to hear from you!
in reply to Mommy1st
Hi Tameika Hope all is ok with you - emailed you 3 days ago but no reply . Hope nothing wrong .
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