Where's Laura?

[Roy1955]

Has she left this forum?

[Lilliebell]

I noticed her messages said hidden

[Glenfaba123 in reply to Lilliebell]

Yes i noticed that too i thought it might have been another Laura.

[Cb1963]

Aw, that's sad news, I know that there's been friction on the forum recently, and some posts were getting a bit awkward to respond to, if that's the right way to put, I shall leave it at that, because I don't want to cause anymore problems, but I want to thank her for all her time,effort and her wonderful help, and honesty comments , and hope to see her again in the future 😇

[Glenfaba123]

So sad that laura has left the forum, she was a great help to me when i joined the forum a year ago, being through what i am going through now she understood me completely and gave me very knowledgeable advice, i hope she comes back soon her help and support on here was always genuine, bring back laura!! 🤞

[Bikafella]

Many people will be worse off without Laura's contribution.

[Bs1524]

Oh that is such a shame. I will miss Laura very much Laura gave me so much help and support. I do hope she will not be driven away but understand why she needs a break x

[1420]

Laura was first to HELP me when I needed help.Starting the journey is the most important part.Her empathy and experience helped me and the Forum will be ultimately the loser.Laura appreciate you have been hurt by comments of a minority but you have helped a majority that must outweigh the negativity?

[jacobsmum24]

Please pass on my best wishes to Laura. When I was first diagnosed with cirrhosis, the help and advice I got from Laura, Katie, Phoenix (who is no longer a member) and many others was invaluable.

I haven't posted for about a year but still read the digest every week to see how everyone is doing.

The reason I no longer post is that the whole focus of the forum has totally changed. It used to be a place where people suffering with real, serious and often life-threatening conditions supported each other and also the partners of sufferers.

Now it is filled with people who think they have an undiagnosed condition and are using up valuable NHS resources requesting repeat tests to set their minds at rest. I know many people who are waiting for treatment for various conditions at the moment which is undoubtedly being delayed due to an epidemic of hypochondria ! I totally understand anxiety, when I was first diagnosed, my anxiety levels were through the roof but I was anxious about something I had, not something I thought I had .

Anyway rant over, it just makes me so angry and frustrated that the forum is losing members like Laura who have given so much to others.

[Ollie9098 in reply to jacobsmum24]

Described very well jacobs mum

[Foxdud in reply to jacobsmum24]

Well said

[Hidden]

I understand why Laura has left - it's a shame there isn't some way you could only allow members with a diagnosed liver condition to join. I understand it's a British Liver Trust group and that is about educating people on how to look after their liver as well as helping those with existing conditions. The current situation and difficulty seeing GPs means that people do self diagnose and liver conditions can cause all sorts of symptoms.As someone with a genuine diagnosed liver condition I don't feel the group is as useful as it was when I joined because of the noise from those who believe they have liver conditions despite all their tests and scans showing otherwise. It is sad that some of the older (length of being on the group rather than physical age) members have been put off by abuse from people who clearly suffer from health anxiety rather than liver conditions (although I'm not saying health anxiety isn't something that needs treating - just not on this group).

[bantam12 in reply to Hidden]

Just because some members haven't been diagnosed shouldn't mean they are excluded from gaining knowledge from the forum.

I have no formal diagnosis and Im not a hypochondriac but have had liver and spleen issues for many years, I have asked the odd question but usually just read and learn.

I have to say the atmosphere of the forum is not that welcoming, new members are often shot down in flames when asking for help and advice.

[Hidden in reply to bantam12]

I worded my comment in a way that didn't get across the point I was making very well. I came on here to find other people with the same rare liver condition and get advice from other sufferers with liver issues and to help others in a similar position. It's not about that any more - it's about point scoring, petty squabbles and generally not something I want to be part of any more. Other people who have been on the site for some time in the days when it was a friendly helpful forum clearly feel the same way.

[Oscar21 in reply to bantam12]

That's a ridiculous comment to make Bantam 12 about the Forum not welcoming new Members. I have been a Member here for 9 years and have never felt this way. I have tried to reply to your new post you recently opened, entitled 'Unwelcome', although it has been turned off by Admin.

Laura and many other long serving members go out of their way to answer questions asked. I find them to be very informative. Please remember, this is just a forum, its members are not paid a salary to constantly answer the same questions on numerous occasions. There is a search button for all to use. The majority of members are not medically trained, they are just ordinary people who go out of their way to try and assist and give their own personal advice and opinion. If anyone is worried about their liver health, they MUST consult the medical profession, usually the first point of call being their GP.

And if members don't find it welcoming, then feel free to find another forum that does welcome you!!!

If Laura doesn't return, then she will be sadly missed by many. She has lived with an alcoholic husband, who sadly passed away leaving her with two children. Her posts are truthful and she speaks from the heart. My message to her would be to take a break away, but please come back.

[Sammyjoe2]

Oh no this is sad news, Laura really helped me when I knew I had a problem but was too scared and ashamed to seek help. After everything she has been through to want to help and support others is testament to her-she is a lovely person.

[Downunda]

Hi All. I agree with you. Laura has been absolutely awesome!! Very kind, caring and knowledgeable. Happy to help and share!

Laura…sure hope you come back.

Love and prayers. Dan

[redpoint72]

ashame Laura isn't on here now. she was 1 of the first to respond to me as well as Katie,After being diagnosed with liver cirrhosis . will miss your wisdom. Chris.

[bleeny]

I hope Laura's back here soon.

[hells456]

I think the forum is a poorer place without Laura here. I was diagnosed with cirrhosis out of the blue and was in a very bad place with so many questions and it was Laura and Katie who helped pull me through and see the light at the end of the tunnel. I don't know how I would have survived the first few months without their support and advice.

[Cilla712]

This is all so harsh. I dont understand why someone would go to the bother of finding this forum - joining it - just to post up nonsense? Surely anyone who has a worry, a concern about their health - diagnosed or not - small or big issue - would be welcome to do that?

I maybe missing something and clearly stuff has gone down that I dont know about but just so harsh. To be labelled a hypochondriac is so judgemental. Lots of people have turned to these groups because of the situation with covid and lack of GP contact.

If I see squabbling on any forum - its not my real life - its not affecting my real life - so I scroll on by.

[Hidden in reply to Cilla712]

But it does affect some peoples lives because they themselves are really ill and vulnerable, it is also at times private, targeted and abusive.

[TT-2018 in reply to Cilla712]

Some people target liver forums because they have a motivation to make a profit. There are certain individuals who run web sites, such as the fatty liver organisation, where right at the top, you see the word “DONATE”. Needless to say, their motivation is to spread anxiety over misdiagnosis or sell some magic elixir and are primarily based in the USA.

[Cilla712 in reply to TT-2018]

Ah I see - I haven’t saw that personally but hear what you are saying,

[Hidden in reply to Cilla712]

They spread dangerous misinformation that could potentially stop someone with genuine liver concerns from seeking help in the right way. Recently there’s been a comment that would stop an undiagnosed individual from seeking medical help appropriately. The way they and others do this is by rubbishing the medical profession, creating mistrust, creating aliases, trolling, whilst targeting, abusing and marginalising the most vulnerable in this forum including both those with diagnosed and undiagnosed liver disease.

When you see people stand up for those with liver disease, they are in fact also standing up for those who are at risk from serious liver disease because they are just as vulnerable.

[Cilla712 in reply to Hidden]

I am truly shocked at this. The initial message posted up definitely didn’t convey any of this and I now understand. When I joined there was nothing but lovely help and advice and I remember a great lady”Ayrshire” something - what a cracker she is. I have had help from this forum but I wouldn’t get involved in anything that would equate to trolling or upsetting anyone - life is hard enough. Thank you for explaining things

[Hidden in reply to Cilla712]

Their aim is to be divisive and inflammatory. I’ve sat with an ascitic drain in my tummy, reassuring a troll and didn’t realise until they started ridiculing me…….

What happens is that those who are genuinely worried about their liver and are undiagnosed feel unsupported and move away from the forum which could be catastrophic for them and similarly those who are diagnosed or care for someone, have their already awful journey made even more difficult. The forum nurses have also been targeted and ridiculed and spent their valuable time off managing complaints. I think that’s why people are so passionate about it.

[sunnysmile in reply to Cilla712]

Yep - Ayrshire is another Laura - both Gems.

[sunnysmile in reply to Cilla712]

Hi, I so agree Cilla, no-one wants to be a hypochondriac - it just happens - I am not but totally understand the feelings of people who are. I have fatty liver not cirrhosis and feel perfectly entitled to be on here - Laura has been brilliant and constant. For those of you talking rubbish by dissing frightened people - shame on you - and look what happens - you just make scared vulnerable people (lots living alone) more terrified than ever. You also lose Laura.

[Hidden]

Even before I was diagnosed, I would refer to this site for symptoms, see other people’s experiences, etc. this debate is absolutely pointless and childish. Everyone knows that in order to get a proper diagnosis , visit your doctor. I understand that in places like the UK, people wait for a long time, but medical diagnosis through public groups should never be a substitute. Insurance may be crazy expensive, but oh boy is it worth it- No doctor referrals ever!

[Scrags64]

Can the admins not turn off comments like they can on Facebook? I too am diagnosed, but find the number of people self diagnosing a real pain. This is not the site to discuss things as none of us are medically trained. I personally find it dreadful that people who are genuinely often seriously ill are having to wait longer and longer to get tests done and to see consultants because of others demanding g tests when there is probably nothing wrong with them. X

[Lils2019 in reply to Scrags64]

Hi,I so agree with this, it took 10 months for my husband to get his diagnosis.

After discharge from hospital in feb the consultant wanted an endoscopy done within 4 weeks of discharge, so the consultant had results from US, bloods, and fibroscan, the endoscopy dept said they would add him to the waiting list.

I actually contacted the hospital and said actually it was urgent because he had varices it could be life threatening and he needed it doing ASAP.

The secretary arranged an urgent appointment and he was seen.

At his consultation in April of this year he was diagnosed with decompensated cirrhosis. In August he was referred to QE, waiting on an appointment to come through to start the process.

So yes, if everything is pointing to everything been normal, please don’t take up valuable appointments which seriously ill patients so desperately need.

[Scrags64 in reply to Lils2019]

I was the same with my endoscopies. I had to have them about every six weeks and they kept putting me off. Spoke to my liver consultant and she told them they had to do them lol. I have had 18 and over 70 variciles banded. Last 2 have been clear and now on 6 monthly. Xx

[Sunflower2021]

I feel very sad that Laura has decided to leave. Laura was amazing on this forum , so genuine, honest and caring. Her support and advice was amazing. I understand why a break was needed and totally am with her when it comes to people with their self diagnosis when they have had tests and there is nothing wrong with them but insist carrying on winding up and frustrating people that DO have liver diseases.

I myself have liver cirrhosis and have not been on here recently because I was also getting fed up with it all.

I hope Laura is ok and in her own time will return 🙂 🌻

[Lilyrosemarie]

I wondered where Laura was too, its such a shame that she left, she was a real lifesaver (as was Ayrshire) when my partner was dying and I didn't know where to turn for support. It will be 4 years on the 11th April since I lost him. I am so grateful that I found support on this forum. Thanks.

[AyrshireK in reply to Lilyrosemarie]

Laura and I are both still here - Laura is now Positive001 and I am still here in my original guise.Hope you are getting along ok all these years later.

Katie x