24 HRS IN A&E!!

[Roxybaby]

Well that was the most embarrassing thing to watch! Trust me I suffer badly with my pain but that guy just made us all look like we're faking it!!! Sorry if this offends anyone, no offence meant!!!!!!

[TonyRome]

I was completely blown away by Lee on 24 hrs in A & E. What a wonderful man he seems to be and his girlfriend/partner is a full blown jewel. The programme really highlighted Behcets. I feel a bit ashamed to admit that I'd never heard of the disease. I hope that the Society now receives the support that it deserves.

If all you 'celebrities' who either watched the programme and were told all about it, thought about supporting the Society instead of the 'popular' charities, a cure might be nearer to reality.

[Hidden in reply to TonyRome]

Hi, May I ask what prompted you to find us and post here?

[John_Mills]

we watched it too. The programme highlighted Behcet's Disease as one of the most difficult types of Vasculitis to treat. There are celebrities who actually suffer from Behcets Disease maybe they should be encouraged to help raise the profile of this awful disease.

Susan

[irish_mike]

I kind of know what your coming from, it did kind of have that look to it (maybe the way it was edited didn't help) but we all do suffer pain differently and i remember before being diagnosed being asked was i sick just to try and get off school. My problems really kicked off when i was 16. The repeated fluid on the lungs, inflammed eyes and a lot of the other symptoms i got all at once a few weeks after being asked that put a stop to that line of thinking from my doctors.

Plus don't forget he was getting a lot of that old laughing gas remember and he was also injected with something originally too. It was his story and how he felt that i could definately connect with thats for sure.

The only thing that annoyed me about that show was that they didn't tell you anything about what was causing his pain or what treatment he received. It just kind of showed you him and her with their new cat planning on getting married.

Also the need of celebrities to highlight this rare disease is needed of course, but the only actor I know that sufferers from it is David Cubero. Best know work from the west wing. I found his video on YouTube once saying that. So at least he is trying and if he gets any celebrity friends he may have on board it may just get that little bit more highlighted.

[Hidden]

This is a general comment/opinion encompassing some of the points raised above.

At least one celebrity with the disease has been approached by the Society - so far no one has been willing to get involved.

Personally I think we should respect that, we don't know how badly they are affected or what it takes them to get through their 'celebrity' day. Perhaps getting involved or even asking their friends and family to do so would just be too much for them. That doesn't mean others shouldn't be approached of course - there is never any harm in asking.

The 'popular' charities situation is one that has been discussed many times, members do their utmost to raise awareness and funds and of course anyone, anywhere who is willing to do the same is much appreciated. There is merchandise available from the Society, from posters & leaflets (can you put one up in your workplace, GP surgery, dental surgery?)to T shirts and collecting boxes (do you know anyone who would be prepared to have one? perhaps the same people who would be willing to put up posters?) There is also lots of advice about fundraising.

Regarding the programme - I think it is the nature of the programme to focus on the suffering and 'human interest' angle, ie, relationship stories, how people cope etc. and not to go into detail about the problem and specific treatment. It would have been nice if they had contacted the Society before the programme went out and worked with them regarding information. It would also be nice if another TV programme picked up on the rare disease and did a follow up - perhaps an interview on a daytime chat show with a patient, representative from Society and a Specialist.

I have suggested this to a few Production Companies and specific programmes in the past but none have been interested. As mentioned by someone else, it's not 'popular' and therefore unlikely to raise viewing figures or support.

Perhaps now it has been aired in the public domain it might be of interest to other programme makers.

Regarding the young man, his pain was his pain, none of us can feel it for him or judge the degree of his reaction to it, just as we can't with any of the other patients on the programme.

I have been told today by one person who knows I have it that she was in tears - she didn't realise how painful it can be and will be much more careful and understanding from now on. She already is careful and understanding, but I know she will pass this on to others which is all good.

Another comment was from a family member, who said although he knows I have it and that I have a lot of pain, because I don't mention it much and am generally a happy and outgoing person, it's easy to forget what I go through and it was a much needed reminder so again it was very useful..

It may not have mentioned all the symptoms or explained anything in detail, but If it showed anyone at all how painful and debilitating this condition can be then it was worth it.

[behcetshurtsbeyondwords in reply to Hidden]

I'm from Canada, and we don't have any kind of society or association here for Behcet's Disease. At least not anymore. Shortly after I was diagnosed, my parents were desperately searching the internet and came across a Canadian health show called "Health on the Line"-- it was an episode about extremely rare diseases and spent half of the programme on one disease and half on another. Behcet's was featured as the first illness, and there were two ladies (from Canada) who ended up becoming good friends by the internet after they were diagnosed with it-- because it was an actual live t.v. talk show, they were able to relay a lot of good info about the disease and also share with everyone how the disease affects them personally. I remember one of the most heart-wrenching things they both described was the pain-- just how incredibly painful everything about this disease is. I completely broke down because pain is the one thing that I have always battled and is the most unbearable symptom I get, and I went through a very long painful road where others (including dr's) didn't believe my pain was real or that it could be as bad as it was. This programme was actually from several years ago-- early 2000 or so, it surprised me because I used to watch this show all the time when I was a teen.. and I could vaguely remember seeing these two ladies, but had completely forgotten about the Behcet's, and yet at that time I was sick and was beginning to suffer from many of its symptoms. Not long after my parents came across this on the internet (I think on Youtube), they found another live programme.. I think it was on a news station in Toronto, Canada, and these two ladies were on it discussing Behcet's again and raising awareness about it. They mentioned they were running the "behcet's Canada society"-- but the website no longer existed, and neither did any info related to the group. This made me kind of upset because these ladies (who were sick and suffering themselves) took the effort into trying to create something here in Canada for Behcet's sufferers, but for some reason, it just couldn't get anywhere and had no support. There is a Behcet's Canada Facebook group now... but that is it.

[helen6009]

One of the celebs with the disease plays a doctor in Holby..How ironic is that

[Hidden]

Yup it sure is! She's one who has been asked and declined.

[DWJ004 in reply to Hidden]

She did go on Loose Woman and talk about Behcets. I wish more people in the limelight would talk about it.

[xandii]

I sat down in anticipation of seeing what was going to happen regarding a young man who had been diagnosed with BD six years ago and what jewels of knowledge the program could share with us all about the disease. Pringles and chocolate at the ready, my OH and I sat in my 'prison cell' of a bedroom where I spend most of my days and nights and waited for the patient to make his entrance in the A & E department.

He was a young man of 25 and arrived in an ambulance screaming with pain from the very first minute and I must admit that it made me quite concerned for him from the onset as nothing they seemed able to do for him seemed to work.

He was placed on a gurney trolley in a side cubicle and given gas which he was inhaling at a rapid rate of knots in between screaming with the pain and this seemed to go on for hours. The programme narrator explained that he had been diagnosed with Behcets and it was an incurable disease and all the A & E department could do for him was to try to help with the pain.

Clearly he was in a great deal of pain and he was given morphine to help him with the gas which didn't really seem to help much and he was suffering so much that he periodically passed out and had to be aroused by his girlfriend, mum or member of staff to ensure he was still generally okay. Each time he recovered he began screaming with the pain again and I must admit to cringing at the horrific vision that was being projected and had I just been diagnosed with BD or was waiting for a diagnosis I would have asked for a razorblade and cut my wrists right there and then rather than face this horrendous illness and what clearly awaited me in my future. I have BD and have had a diagnosis for around 15 years now and it frightened me to death !! I had tears running down my face and I wanted to just scoop him up and tell him it was all going to be alright. I felt physically sick at the amount of pain he was feeling.

There were times in the program when he spoke outside of this individual attendance to the hospital and so did his mum and fiancée. However, I heard nothing whatsoever about the centres of excellence and whether he was getting any form of treatment from a specialist just the emphasis on how much extreme pain he was in all the time.

I have no doubt at all that he was a very genuine BD patient but the image of the disease that was projected was that all you could expect was to suffer extreme pain and no one could help you with it except with strong pain management. We all know this to be absolutely not true at all and many of us have medications that help with the day to day management of the condition without leaving us in the state this poor guy seemed to be.

Yes, we feel extreme pain, yes it makes us frustrated and we feel unable to cope at times and yes, it does completely take over our lives in some cases but there are also an awful lot of things we can have to help us manage this condition and make our lives much more normal than was being suggested here.

My feelings are that I commend them for bringing the subject to the forefront on a programme of this type but it was not as accurate as it could well have been projected and maybe gave an inaccurate impression on how life HAS to be with BD.

My rating of the programme was 7 out of 10 for good intentions and awareness of the condition and 4 out of 10 for accuracy of information concerning the treatment and management of BD. I came away quite distressed about it all to be totally honest until I put it all back into perspective alone and thinking it through for myself afterwards.

For anyone out there who is newly diagnosed or looking to get a diagnosis, please don't reach for the razorblades just yet ........... there is an awful lot of help out there for you and you may never find yourself in such a state as this poor lad clearly was at the time the programme was filmed. I really hope he has moved on and got more help in managing his condition now and I hope someone from the society will contact him to make sure he gets the information he definitely needs!

My postman summed it up this morning when he spoke to me through my window. I have known him for around 10 years and he had a tear in his eye when he told me he had no idea life was so awful for me and that I was continually living in so much torment after watching the programme himself. I put him right as to my own situation and he was much relieved to learn that I was getting much more help than was projected !

Please bear in mind that this is purely my personal take on the whole thing. What did you think please ?

tootles folks xx

MOVED FROM MY OTHER POST AS REQUESTED ! xx

[Hidden in reply to xandii]

I agree, it could give the wrong impression to the newly diagnosed, those awaiting diagnosis and the young and vulnerable. Unfortunately that's the nature of the programme and there are some who worry about things however they are presented,

I daresay some of the population are now worried they might get a fishbone stuck under their nail after it was featured a few weeks ago and I say that as someone who knows people like that!

What I hope most of all is that it has given a message to those who have never heard of it, that awareness will be richocetting around the world right now and the Society will see £'s rolling in and that anyone who knows a BD sufferer will have some understanding of what it can be like for SOME and therefore treat the sufferer with respect and support them as best they can.

It's certainly opened up a lot of discussion amongst people I know today.

More importantly, Pringles AND chocolate Xandii? Honestly!

[xandii in reply to Hidden]

*crunch .....crunch........sucks fingers*

Aye ....... what ? ........ Oh rats ! I've been rumbled again !

xx

[Hidden]

Hi,

I watched it too. I sat there and thought OMG!!

I got diagnosed last year and the programme in my opinion only showed how much pain we can be in at times and not much about how we are effected on a daily basis.

Thankfully being seen by the right team of hospital consultants I can pretty much manage my BD. There are times when I am in a lot of pain and have had a rough few months with a flare, but am hopefully heading in the right direction to getting things under control.

I think more could have been empathised on other symptoms and the treatments that are available. Don't think the programme gave a true picture of BD.

c xx

[tinkmbs]

Hi all

I thought the programme was ok I found it difficult to understand why he received little attention from the medical team throughout the programme. I must admit to cringing every time he screamed I really felt the pain he was suffering.

I felt and wished they had emphasised on the daily life that we live and the way we live it and the struggle we go through every just to get up in the morning like lee the first thing I feel when I wake is pain and exactly that when I go to bed. Shame they couldn't do a documentary on The day in the life of A BD suffer.

Sue xx

[scruffy1]

hi all i watched it with my family and all i can say is they were in the horrors i tried to tell them that it was that poor mans way of dealing with his own pain but it fell on deaf ears as you all know the pain is only one aspect of bd and so to that end i felt the programme was a bit misleading as it did not give any insight into the disease in general it also did not say what if any course of meds he was on or indeed weather or not he was even taking them i know that its not easy to sit and watch and i really felt sorry for him and his mum and fiance but as with all tv that programme would have been edited to death so being critical of him in my view would be harsh because a lot of the stuff he may have said or indeed the medical staff in a&e could have been doing or saying may have ended up on the floor of the editing suite. its good to see bd getting some kind of awareness on tv and hopefully it will make some people sit up and take notice and even better still people might start to understand what people with bd are going through.well thats me all ranted out but one thing i will say if anyone out there thinks bd got a bad rap on channel 4 you guys need to take a look at how little the embarrasing bodies people dealt with a man who was diagnosed with bd on the show they spent more time talking about fungal nails than behcets for those who are interested it can be looked up just go to embarrasing bodies website and search bechets disease episode and see what little they made of it so to all with bd keep fighting and never give up

regards

chris

[Michja]

I'm in Australia and didn't get to see the program but this poor bloke must have been in a world of pain. I watch my now 11 year old daughter go through this pain. Although she screams out rarely, she mainly withdraws. Silence. Quiet dark places, mainly the bedroom with her wheat bag and me, stroking her head gently. If her head is killing her I'll rub her back, wherever I feel I can help. It would be wonderful if we get some needed $ to help with research for horrible BD, make every sufferer live a better life. Xx

[lucywm]

I don't have Behcet's and I had never heard of it until I watched this program. Lee and his relationship with his girlfriend touched my heart unbelievably... I feel like I want to do something to help publicise and raise awareness of this disease. I understand from the comments about that there are complete different levels and experience of this illness, and I myself suffer from some ailments but nothing on this scale.

I think that Lee himself, as he is so personable and likeable, would be good to raise awareness of this disease - believe me there are a lot of people out there who feel the same after seeing this distressing attack and would love to be able to help in some way.