Teen died of condition so rare medics powerless to save her.. John and I were very shocked and saddened to read this article

[John_Mills]

This should not be happening! This article was in the Belfast Telegraph at the weekend... Kelly-Lee lost her life to Wegeners Granulomatosis

We would value any comments please

[JacquiM Volunteer]

This is so, so sad and very shocking that Vasculitis was not picked up until after young Kelly-Lee lost her life. Clearly some of the medical profession still have a lot to learn. It is very distressing that yet another young life has been lost when it is not neccessary. Totally unacceptable in my opinion

Thoughts for Kelly-Lee's family xxx

[HiveMind]

This is all the more reason that GP's etc need to KNOW the early signs & symptoms of Vasculitis. So very very sad.

[hamble99b Volunteer]

tragic, just when it seems to be getting better recognised.

Maybe Dr Chris would mention it on this morning if we all wrote to him?

sandra.

[John_Mills Volunteer in reply to hamble99b]

do you think it is worth a try Sandra ?

Susan x

[hamble99b Volunteer in reply to John_Mills]

I hope so. could we run a poll?

"would you email dr chris & ask him to highlight vasculitis?"

yes; no; not interested; don't know.

sandra.

[John_Mills Volunteer in reply to hamble99b]

I think I will just write an email to the programme and see what happens.. keep your fingers crossed..but don't hold your breath.

[pwc51]

As others have noted this is another sad story.

I find the coroner's comment somewhat disconcerting with the comment of 'impossible for staff to diagnose'. I don't disagree that it is difficult to diagnose but surely nothing is impossible if there is a will and in this case education of the medical profession is the key to success in the future. No mention was made of this.

[matk]

A very sad story indeed, having gone from my GP who didn't know anything about Vasculitis, who then sent me to belfast hospital to dermatology (was living in NI at the time)

carried out a biopsy which came back i have Vasculitis, i am still waiting to find out which type i have, but having moved back to the UK now having to go through it all with my new GP, it does seem that there is a need for education for Vasculitis

[jackrussell]

A very very sad case, unfortunately it seems quite common for G Ps not to have any knowledge of it , There are 7 Drs at the practice I use and not one of them had seen or had knowledge of Vasculitis, and more sadly apart from sending me of to see a Dermatologist show no interest in it whatsoever, infact on the 2 occasions I have asked for advise from them the reply is " It,s no use me looking at it as I know othing about it , best to see your consultant" they seem almost afraid to get involved. I do hope Dr Chris will take this on, I feel sure that he will as they seem to care about these difficult illnesses. GOOD LUCK , with the Email.

[kath12341]

Really sad is it just british gps that are not clued up. My husband was doing some work for a spanish dr practicing over here and when my husband described the symptoms I had he immediately said that is sounded like vasculits

[John_Mills Volunteer in reply to kath12341]

We found this too in France..we had to call at a local docor in a very small village in the country side in SW France... and as soon as John told the doctor that he had WG..he was brilliant and knew all about it... he also spoke to John in English...

[copeash]

I was very ill from bebinning of May 2010 until I was finally diagnosed privately in September 2010, ggod job I went private for which I could not really afford, total 1082.00, had blood tests and pet scan, specialist said I was a timebomb for going blind or stroke, was very ill and in total agony, erroes made the hospital and gp's one said go to see a dentist because my jaw was stiff, did not take into account all my other symtoms right artery on my head was so painful cried all the time with pain in head , severe fatique and flu like symtoms as well has several other things, I am always ill and pick up infections, had flu swine flu and bronchitis recently and have several lung consolidations, suffer with severe ostoarthritis and now have asthma, already born with Arnold Chiari malformation of the brain a neurological disorder and have small mitral valve leak, get fed up of been ill.

Gp's need to get clud up more on vasculitis, feel so sorry for that girl and her family it should not happen.

[EmmaC in reply to copeash]

Hmmm I went through the similar process of lots of different medical problems too, prior to diagnosis. It was only my consultant that knew what was wrong. The GP's never considered that all of my problems were connected to something underlying. Maybe this is a key problem with not being diagnosed effectively, the GP's can't seem to put all of the symptoms together. It is a tricky illness though, and I am so grateful my consultant was 'on the ball'. I feel so saddened reading these news articles, heart broken for the families & not to mention scared out of my wits!

[BronteM]

This is such a sad story for her family, and really should not have happened, surely? It seems just too easy for the coroner to make that comment....and I wonder whether the next person who goes into that hospital with similar symptoms will have improved treatment?

Our GP practice have been honest enough to say that they knew nothing about vasculitis before I was diagnosed, but would try their best to support me now; And they have done. Two retired medical friends (one was a consultant, the other a GP) admitted that they remember it being mentioned during their training, but never actually met it. As did a Canadian friend who works in a hospital and a poly clinic.

A newly qualified GP has also told me that she's glad I'm not in her practice; she would find me quite scary and would worry a lot. I've been trying to take this comment with me, as I can understand it and it might explain a lot.

[Hidden]

It must be devastating to lose a loved one knowing there was treatment that could have saved their life. In 2013 the medics should know how to treat vasculitis, its unacceptable. Again as someone else stated before, the coroner's report saying, it was impossible for staff to diagnose. Why? Yes it can be a complicated condition and uncommon, but there alot of people who have it and alot more are going to get it.

I have WG and my GP has no idea about it and he has no intereast it or me. I live in n. ireland and have been extremely fortunate to have been referred to Addenbrookes in 2009 by my consultant, when I wasnt responding to the usual drugs and was critically ill.

I know from personal experience, too many times and too often, people present serious and life threatening conditions to the medical profession and are sent away feeling stupid and thinking they are imagining their problems and unfortunately end up paying a high price, with health complications for life. The Drs are treated like they are untouchable and they are. If you have a complaint, they make dam sure you wont be taking it further and you dont get any further with it! Just like that coroner, "It was impossible for staff to diagnose". So sad that Kelly-Lee lost her life. Our lives are in the hands of the Drs.

[MPAChi]

I can't follow the link for this and I have tried to find it but sounds truly awful. I think the Good Morning idea is a great one.....contact me if I can add to this idea or do anything.

[jackrussell]

looks like the Belfast news has removed the item, I read it when John and Susan posted details, it seems to have disappeared. !!

[John_Mills Volunteer in reply to jackrussell]

You are right it has been taken off! I have been back to the original article and it is not there...very strange

[jackrussell]

Is it possible it has caused " a stir " perhaps we should " watch this space ".

[John_Mills Volunteer in reply to jackrussell]

It is possible jackrussell...as you say lets watch this space...

[Dave_Buzzey_B]

Hi Sue I followed your link but its saying sorry earl not found. so unfortunately I haven;t been able to read it. I am sure its a very sad story and just re-ittirates my last post of andy the young man who lost his life at twenty four years old. We all need to make a conserted push to educate our doctors even if only leaving flyers in the surgery, if one doctor reads it then thats one more doctor on the road to being educated.

[Kazam]

Can someone please comment on what happened with Kelly-Lee for those of us that missed the link? I'm so very sorry to hear this young lady lost her life... I've heard Vasculitis can be fatal but haven't found much info.

.It took me almost 20 yrs to be diagnosed,......long story!, My VETERINARIAN, is who told me I had it!! my dogs had it as well........ It took me another 14 yrs to finally be diagnosed at the Vasculitis Centre at Mount Sinai Hospital in Toronto ....,Doctors in Canada are un-educated too!! I'm currently waiting for a drug called ''Rituximab'' to be approved to treat my Cryoglobulemic Vasculitis...in the next week as my condition has greatly deteriorated......I'm scared to take Rituximab as people have died during the first infusion ,but I need urgent treatment.. I've lost total use of my left hand and both feet...''Mononeuritis Multiplex'' It seems to be affecting my muscles too..The pain is getting to be unbearable....

If anyone can comment on what happened with Kelly-Lee.I'd appreciate it.....I'm trying to ;learn all I can about this hateful disease.. ,it's good to find people who understand...Thank you!

[jackrussell]

Just a thought, Does anyone have friends/relations in Belfast that may have a copy of the Belfast Telegraph, that carried the article of the very sad news of Kelly-lee,

[John_Mills Volunteer in reply to jackrussell]

Now there is a thought... we do..thank you

Susan

[John_Mills Volunteer]

the headlines were

"Teen dies of condition so rare medics powerless to save her" "A teenager died from such a rare condition it was impossible for medical staff treating her to have diagnosed it,a expert witness has told inquest"

It would seem Kelly-Lee was 17 years old, and was admitted to hospital with Pneumonia and within 7 days she had died. I think the original cause of death stated was pnemonia, but another doctor questioned why someone as young as Kelly had died from pneumonia as apparently, this is unusual in someone so young... apparently it was found that Kelly-Lee had Wegeners Granulomatosis. I believe Kelly-Lee died about 18 months ago just before her 18th birthday. But this second inquest was just very recently, hence the article in last weeks Belfast Telegraph. We just thought maybe the doctors should have looked at the bigger picture of why Kelly-Lee had pneumonia before she died rather than after she died. Also it would be interesting to know if she had suffered with any other symptoms before she became ill with pneumonia ...... I will see if I can get hold of a copy of the paper..

Susan

[Kazam]

THANK YOU Susan !! I agree, It would be interesting to know if Kelly-Lee had any other symptoms prior to her being hospitalized with pneumonia... Wow ,she was in hospital for 7 days and died?..... Why didn't they realize there was a problem and start testing her when she wasn't responding to treatment ?? surely they had Rheumatologists on staff ?? It seems more and more young people are being diagnosed with Vasculitis........Now the medical profession needs to be educated so this doesn't happen....so sad.

[braindamage]

Even taking into account the tendancy for the press to sensationalise headlines, I'm surprised that nobody at the hospital took the trouble to realise this was very unusual?

I sincerely hope that the Hospital and all it's relevant doctors will be given training? This is clearly NOT acceptable!

Condolenses to the family.

[antony9500]

Makes you realise how 'lucky' we were that an initial diagnosis was made within 6 hours of admission to hospital