Why did you join BLF's Health Unlocke... - British Lung Foun...

British Lung Foundation

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Why did you join BLF's Health Unlocked forum? Thoughts and comments welcomed.

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Hi all,

I hope you're having a good Friday.

BLF are looking for some help from our lovely Health Unlocked community.

If you have any feedback regarding the forum e.g. why you joined, how it helps you or any other comments, we would love to hear from you .

Please add your comments onto this post below. We may not be able to respond to all of your comments, but we will read every single one.

Thank you very much in advance for your help with this! :-)

Best wishes,

Ben

BLF Admin

45 Replies

I joined because, as a carer, l wanted to connect with others who found themselves in a similar position.

I have found this site to be welcoming, caring and supportive with lots of helpful advice for those who want or need it.

I also enjoy supporting others and joining in some of the banter and general chat. A great site. Xxxx

Purl123 profile image
Purl123 in reply to sassy59

Hi initially I was so frustrated and confused by medical team as I was not getting any answers so I joined to get some support which was amazing, I was no longer on my own, I am so grateful for everyone’s help thanks to all and hope everyone is doing good x

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I joined because I have a lung condition and wanted to interact with people in a similar position.My mother died in May this year from pneumonia brought on by copd so I know the consequences of this illness.While I know I am in a lot better position than many people on here I do still worry about the future.I try to remain light hearted about things as I really do think laughter,if not actually the BEST medicine is a pretty close second.

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Hi, Ben, I joined as I needed some info on this dreaded illness COPD is and why my life has been affected so much, then reading posts in the forum I learnt from the genuine yet still happy people out there that get on a day to day life.

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I came last week its good x

I wanted to find a forum for people with scleroderma, they aren't exactly two a penny!

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I think something like this should be a personal private thing to discuss as there's lots of ppl that are on this site months and don't say anything to anyone just a thought if you turned it into like a poll type of answer but confidential information to be collated xxx

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skischool in reply to Hidden

Thats a very good idea Angie,there are loads of really nice people on here who i feel are quite shy and find it hard to post when i would love to hear their stories.........Skis and listening cat x

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Hidden in reply to skischool

Thank you skis and scruffers who I love dearly xxx

mrsmummy profile image
mrsmummy in reply to Hidden

We are all anonymous on here Angiecbr and this site was made for sharing. However, I am sure anyone who really does not want to share info will just read and pass on by. :)

skischool profile image
skischool in reply to mrsmummy

mrsmummy,that would defeat the object of the exercise if Bfl really want to hear everybody's opinions,then an option for confidentiality all be it through another avenue for them to contribute is essential.We do not want the voice of the people to be lost because they passed on by due to not wanting to disclose their personal reasons to a mass audience.............regards not shy and reserved skis and a cat with attitude, :)

mrsmummy profile image
mrsmummy in reply to skischool

Anyone that shy skischool can message Ben directly. :)

Ern007 profile image
Ern007 in reply to mrsmummy

mrsmummy Very late reply but your point is excellent. Many more people read posts on forums that actually post. People looking for information from people with conditions not unlike their own. That;s why forums go beyond being a community IMO..

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mrsmummy in reply to Ern007

Late but nonetheless relevant. :)

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Hi Ben

Thank you for asking.

I was on the Asthma Uk website for years, I still am but I discovered I had LAM as well so guys on the Asthma UK told me to try BLF.

I think I got the info for LAM action from your helpline. Since I have joined LAM associations.

Why? well to exchange, comfort each other. Having a lung disease can be hard on ourselves, and difficult to share with our families and friends, our colleagues maybe, it’s time off with other patients who understand what you are going through.

Have a nice weekend

Fran

I joined in the first instance to find information and help over my decreasing ability to function due to good. Over the years blf and other members have been very helpful and sympathetic whilst providing very credible information. Long may it continue.

I came in despair. I was diagnosed at a very severe stage with a disease I had never heard of and given no information. I didn't know which way to turn. Finding the BLF was a life saver for me.

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I joined for all reasons others have said ALSO i think when we talk share stories GOOD & BAD

It helps to drive research intrest and might be just what is needed one day to find that much needed cure also helps with social isolation :P

Even if your not very social ;)

I joined because I was researching my own health and symptoms as I was tired of being fobbed off by my GP. I learned a huge amount from the lovely people sharing information here, and armed with what I had learned, I actually got a diagnosis last week of Bronchiectasis and mild COPD (amongst other non lung related diagnoses). If it weren't for this site and the people on it I would still be cowering, scared of the next chest infection, with no idea what was wrong with me...x

This site came up for me while googling Bronchiectasis. The friendly, helpful atmosphere appealed to me immediately and three years later I'm still a regular here. I came at a point when my illness had become chronic, frightening and isolating. It was beyond wonderful to be able to chat to others who knew exactly what I was going through and who offered helpful advice and coping strategies based on their own experiences. The way people share and support each other on this site is inspirational and for many, this is possibly the only source of support they have. it's also an invaluable space to vent and let off steam about the frustrations of coping with long term illness. There's a huge sense of friendship here and genuine affection between members.

The British Lung Foundation provide a wealth of information and support services here and run the site super-efficiently. I'm not familiar with any other health support sites but it seems to me that this one definitely has a winning formula.

I joined by chance during a time that I was very ill and frightened. I came upon the site in the middle of the night.

I have found some of the shared information interesting and useful and great to have somewhere to post a query.

I guess we are all like minded to an extent. I think chronic illness can be a lonely frightening experience. This site has helped me.

Just want to say thankyou for it.

I too joined when trying to help myself as I was getting nowhere at the GP. The site and the people on here have helped me with big problems and small and now I feel I am at a point where I can pass on things I have found help me to others.. it is invaluable! I have recently found out I have heart failure too so looked for a forum like this relating to heart problems but unfortunately couldn’t find one x

mrsmummy profile image
mrsmummy in reply to Knicho

There is a forum you may find useful.

healthunlocked.com/bhf

Knicho profile image
Knicho in reply to mrsmummy

Thank you this is what I was looking for! 😊

I joined when I was researching a new diagnosis of bronchiectasis. I had never heard of this condition and was desperate to read real people's views comments and advice. I had googled bronchiectasis and although some info was useful there is also a lot of scary and frankly incorrect information out there. I go through periods of following posts religiously and then stop for a while. If I have a query, worry etc. this is the first place I come to as there is always someone who has been through similar and can give advice and reassurance. I love to read positive comments related to my condition especially when I am going through a rough patch. I think people here are particularly empathetic because they are going through the same things.

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I joined in 2011 when my husband was unexpectedly diagnosed, after a biopsy which went horrendously wrong, with Idiopathic Pulmonary Haemosiderosis, a very rare lung condition. No cure / prognosis - we didn’t know what the future held & I was hoping I would find someone who could identify with us. Although I had plenty of support from members no one ever said they knew anything about the condition or anyone who had it. Still haven’t come across anyone with it & sadly Mike died just over two years ago, four years after diagnosis. He had a cardiac arrest resulting from the IPH weakening the right hand side of his heart.

We are always advising people not to Google but that is how I found the BLF 10 years ago (before HealthUnlocked). I needed information, support and someone who understood and that is exactly what I found there. And then we moved here. There are lovely generous people here who share their experiences to help others, who then stay and share in their turn. There weren't anywhere near as many members then and few are still around now but the site goes on and continues to help people to find advice and support. It is also a place for forming friendships - when you know as much about each other as we do the bonds are strong. Long live the BLF forum, its Helpline and its lovely staff!

Live in a remote village,loneliness,despair.

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It's a bit like pulmonary rehab you meet people who are worse than & some better, you are able to pass on your experiences which may help someone else and take back other's experiences. It's become a daily routine to look through the forum and respond if appropriate. The forum admin is also good for information and contacts. Do not stop it I'm sure a lot of people would be most upset.

IKeith

I joined to find out about other people with my condition and I now find that I can pass on information about things I have learned. I can also unload any problems and tell people about my health and always receive support and comfort from the replies.

What I don't like is the new format where all the topics are jumbled up together, the dogs and cats, the jokes and the other illnesses that I don't know anything about and can't help with.

But geneerally I like HU and will continue to be supportive and supported. Many thanks.

Lizzy

I joined the forum about five years ago. My reasons were:

To seek comparative knowledge about COPD from other sufferers;

To share my own experiences;

To benefit from sources of help and information already found by others.

I have benefited because:

All three expectations above have been met;

My understanding of my own responses to COPD have been improved;

I have been encouraged by the news of other people's experiences;

My knowledge of the disease and its symptoms, treatment and prognosis has been greatly helped.

A side benefit I believe is that i have also become a better patient for my medical and caring circle.

Finally I would greatly miss the regular input to my mail box of others' activities and experiences and humour. And he regular infusion of new sufferers joining the group. Keep up the good work.

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I joined HU few years ago, and was delighted to find a community for ALL my health problems. Bronchiectasis, RA, OA, Osteoporosis, cancer, Vasculitis, and feel so welcome on all of them. It must be a Godsend for housebound patients. I've learned so much about all my health problems, enjoyed interaction with people I wouldn't otherwise have met, and had a damn good laugh at some of the jokes posted on here. I love it here. :-)

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Tripped over it when googling bronchiectasis.

Some very well informed people on here which makes it worth staying.

I can't do the empathy hugs & cuddles stuff but fine if others can and it helps people.

Hi I joined around four years ago, my husband was diagnosed with c.o.p.d and after googling I was very afraid about his future, I rang the b.l.f and was directed to this community and have found it has helped me understand the condition and given me hope for a good future, thank you all ps I also have a lung problem a very large bulla so you have helped me understand this as well

Hi Ben I joined BFL to find out more about bronchiestasis and lung disease in general as I had been coughing for about 5 years.

I have since had a diagnosis of bronchiestasis and am now trying to work out what works best for me. The site has helped me to understand the disease better and stop myself from going mad at times.

I would use the site more but trying to work full time and keep myself well seems to take all my energy at the moment but I intend to become more involved :) and send my thanks to everyone for sharing their time, stories humour and support X

I was part of the original trial community way back when, before HU. Back then I had just one lung condition, now; well I don't want to depress anyone... but its great HU has discussion forums for other health issues too :)

Like Sassy59, I am also a carer.. Reading and taking part in this community has enabled me to understand a little of what it must like for my 80 yr old husband in his daily struggle with (now) severe COPD. The knowledge I have gained helps me enormously in caring for him and is also very useful when we are dealing with the various health professionals. With the knowledge I have gained I can ask 'informed' questions at appointments which has sometimes in fact led to different medication being given to him, from which he has benefitted. My husband will not use the internet which means he is really quite a lot in the dark about his condition, so I am able to find out, explain and suggest things to him. Whenever there is a problem I know I can always find some answers which may help.

It was quite frightening really when he had to go onto oxygen and there were so many questions I wanted to ask, but I got everything from our friends here. Everything about concentrators, different types of cylinders, cannulas, how to manage with holidays, insurance, driving the car, - the subjects I have found information on are endless. It was also through the HealthUnlocked community that I discovered the Breathe-Easy group, which we have now attended for several months. It gets my husband out and speaking to other people and we are beginning to make new friends.

My husband's COPD has changed both our lives in a major way. It certainly is not a way I expected it to be and, frankly sometimes, it is pretty awful. But knowing I can access this wonderful community does, in a way, keep my sanity, thereby making me a better person to care for my long suffering husband.

Thank you to everybody. x

My dr mentioned bronchiectasis so casually and without explanation that I looked it up and was terrified by what I discovered. BLF was an incredible source of wisdom, experience and support and gave me the courage to pursue a specialist’s diagnosis when the drs told me that it would take too long and wasn’t worth doing. I’ve got the diagnosis and specialised treatment and am VERY grateful to the BLF community for their help.

I joined this year after being diagnosed with moderate copd. i was trying to find information and came across the british lung foundation website and then this forum.

The forum has been invaluable in helping me cope with copd. It has also helped with my emotional and mental health and wellbeing in the sense that I don't feel so alone. Copd is scary and it is very helpful to read the advice and support offered on the forum by people who really understand what it feels like to have this condition.

I think it is a brilliant resource. GPs should recommend this website to their patients.

I've been signed up to health unlocked for a while, my Dad passed away just over 2 weeks ago from IPF. Our family has never heard of IPF before and it was hard to understand when my Dad was diagnosed earlier this year. I found the British Lung Foundation website and social media pages from searching for information online. It's been a very difficult thing to deal with I've been trying to understand why this disease isn't very well known.

I joined Blf quite a number of years ago when I was diagnosed with copd. It was good to talk to others in the same situation and I could ring their helpline for information or help. 4 years ago I was fortunate enough to have a double lung transplant. I still keep in touch with health unlocked and always happy to share my experience with anyone interested. This site was a lifeline to me.

I joined this site because i was scared when diagnosed with copd and reading some of the posts on here from the people who give good information and advise has really helped me on how to look after myself more better and learn more how to live with copd.

I had never heard of copd before so thank you health unblocked and all the careing and helpfull people on here

best wishes

music

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Hi everyone,

Thanks so much for all of your comments, it's lovely to read all of your comments. These are all incredibly helpful and interesting.

This truly is a special forum, thank you to everyone for your continued membership and contributions!

Best wishes,

Ben

I have Asthma (life Long) & Bronch diagnosed 2014 after repeated chest infections since end of 2012. I was having so many infections I wondered if everyone was the same & made a posting. Found out this was not so & a call to BLF confirmed this. A posting in 2016 by someone pointed out that Seratide had side effects of repeated infections in SOME patients & this was in the leaflet with the medication. Only SOME note as it works well as an asthma preventative. I requested a change from this medication. So after 11 chest infections/fevers/chills & 18 weeks of anti bio's in the first 11 months of 2016 it was changed to Fostair 10th Dec 2016 (I'll never forget the date). Since then I have had only one illness. BLF & the members who post items have literally changed my life. Thank You.

Hi Ben

I joined the forum after being diagnosed with Scleroderma [Systemic Sclerosis] some of my lung function tests have been suspect and pulmonary hypertention was suspected at one stage, this is a possibility with my form of scleroderma. Fortunately there was not enough evidence collected after visiting a specialised unit in Sheffield, thank goodness. I am monitored carefully and my last lung function test was good. It can be a very lonely place when diagnosed with a rare disease that is not curable little known and understood. I find comfort in knowing there is a forum I can visit when in need.

Thank you for being there

proffishopper

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