Making physician's more aware of wegener's

[Lila]

What is everyone's feeling on seeking an attorney for the misdiagnosis of Wegener's? It wouldn't be for the money, but for doctor's eyes to be opened. Those of you that know my sister's story, you know that she has suffered for many, many years ever knowing what was wrong with her. I think that if there was more attention on this disease, maybe more physicians would look into Wegener's as being a diagnosis for there patient's. I work in the healthcare field, and after my sister being diagnosed I see ALOT of patient's that seem to have similar symptoms. Many doc's have never even heard of Wegener's!
I was just wondering what your opinion on this is....! Thanks! :)

[pberggren1]

I'm not sure where a lawyer fits in to making docs more aware of Wegs.

[Jack]

Unless there is obviously a lack of care I don't think you can take action against a lack of knowledge. Wegener's is not the only disease to be misdiagnosed, in fact your local GP is only really equipped to deal with the common stuff and will be out of his depth with many of the more unusual diseases. I think we can expect more from hospital specialists, but even they cannot be expected to diagnose every disease. It all seems obvious when you live with the disease every day and have done your own research, but it remains a rare illness that few have even heard of.

[elephant]

Not many doctors have even taken care of a Wegeners patient and they never know where to send them.

[JanW]

I think a lot of people in the VF would say that sharing your own story (or in your case your sisters story) is the most important tool you have. So as you see your doctors and they ask about changes in health in your family tree make sure you do a 30 second "elevator speech" about WG. Ideally we patients should be telling everyone we can about our stories. Think about breast cancer. When I was a kid it was only spoken about within families - sometimes not even then. Stepping out of the shadows when you have a much rarer disease is even more important.

[Sangye]

Lila, it depends. I don't remember the details of your sister's history, but there are some members on here whose doctors really should have checked for Wegs or at the very least referred them to a specialist for further evaluation. I'm thinking in particular about people who had severe, chronic sinus problems and developed lung and/or kidney issues beyond the norm (eg, not just bronchitis). That just screams Wegs and would be hard to justify a doctor missing it.

However, if I had gone to a doc while I only had severe joint pain for 8 months, no one could expect them to think Wegs. Once my lungs were involved though, that was a red flag for a handful of diseases, among them Wegs. Yes, Wegs is rare. But doctors do still learn about it in medical school.

I'm not a fan of taking legal action against doctors just to punish them for missing a diagnosis. I think either meeting with them in person or a heartfelt letter would better accomplish the goal of educating them and bringing some closure to what are probably open wounds. Speaking as a physician, I can tell you that if I missed a diagnosis like Wegs, the punishment I would inflict on myself with guilt would be far greater than anything a lawsuit could do.

[JanW]

Most of the people here have had a missed diagnosis and some do go speak to med school classes.

The VFs role in raising awareness is also an important one.

[Lila]

I guess you guys are right, a lawsuit is prob not the best idea. Pberggren1- I was thinking that at least HER Rheumy that was treating her for many years could of at least had is eyes opened. That he could of possibly tested her years ago for Weg's. Instead, she has had a trache now for almost a year. I feel like if she was diagnosed years ago, she would have been on the proper meds that hopefully would have not let Weg's progress on her the way it has. Also, her Rheumy will not see her any longer which I believe is because she is a risk. It's ok because her doc's at JHU are awesome!
There is not enough awareness of Weg's. I remember when I first applied for FMLA, I told my GP of my sister's disease. She never even heard of it.
Sangye, you are right....but some doc's do not have the compassion that you have. It seems like alot of doc's now are just in practice for the money. I have witnessed that first hand.
Thanks Everyone for the great advise....it was just a thought I had...

[Doug]

I think a lot of people in the VF would say that sharing your own story (or in your case your sisters story) is the most important tool you have. So as you see your doctors and they ask about changes in health in your family tree make sure you do a 30 second "elevator speech" about WG. Ideally we patients should be telling everyone we can about our stories. Think about breast cancer. When I was a kid it was only spoken about within families - sometimes not even then. Stepping out of the shadows when you have a much rarer disease is even more important.

How very, very true, @JanW. I try to "educate" anyone in or out of the medical profession about WG. I never assume a doctor I'm seeing, outside of the WG circle, is anything more than clueless about Wegener's granulomatosis, and I even take it up with their nurses because they are the ones who experience patients the most. I find most (ENTs don't...no, I promised myself not to trash ENTs today, Sunday!) are interested in hearing my tale as a patient, and I am glad to measure their understanding as I talk and they comment.

[pberggren1]

Ya Doug, it is Sunday you know.

[elephant]

No sinning on sunday. SHHHHHH

[Doug]

At least againt ENT doctors. They are doctors, aren't they, ENT's, erm, MD's not "Mad Dentists" or something else?

[gwenllian111]

I would take legal action. Get legal advice. I did, and it changed my life forever - and it forced health care changes, to benefit all patients.

[gwenllian111]

I'm not sure where a lawyer fits in to making docs more aware of Wegs.

Of course it does!

Honestly, I really would take legal advice. You should do it for yourself, and not just to raise awareness of WG - there's nothing wrong with that. You have been affected by the consequence of the medics negligence, so why shouldn't you claim?

My family were mortified when i claimed, but I remember my solicitor saying, you aren't awarded compensation for nothing - it's for a very good reason.

I'm glad I claimed, and won. As a result of the case, the hospital employed more nurses and doctors, to make sure that other patients didn't suffer. And, the financial side of the claimed HELPED. I can now provide for myself, my young children, and live a better quality of life than in the past.

Sorry for going on about this, but I do think it's important. Why should WG patients suffer, at the hands of other people's neglect and sometimes arrogance in the medic profession?

[Psyborg]

I honestly thought doing this last month after being turned away by 2 Rheumy's for "nothing wrong" with my labs and two emergency rooms treating me like I was looking for pain killers. I basically decided that I probably didn't have enough information to prove any sort of malpractice.

I will say that it was less about getting money from them than it was a case of feeling pretty angry at the amount of money the hospitals and doctors had taken from me for basically zero results. During my angry phase this really was making me upset. At this point I'm feeling much less angry about the hole situation and that is less of a consideration. That said I could still see this if you feel like it will open people's eyes, but on the flip side every time we have a lawsuit to a doctor we are affectively raising our own costs for care as well. I'd honestly probably never do that to my own GP, but the specialists that messed up I'm less sure of.

[elephant]

Gwen, I remember reading your story, I would of done the same thing. You went through hell and had accumulated damage from doctors negligence..

[Psyborg]

I agree...if negligence causes further damage it is a big deal.

[Sangye]

Gwen, yes-- like Elephant said, your docs were very clearly negligent. Each case is different and all the facts have to be weighed.

Malpractice can only be proven if the negligence actually caused harm. It can be very difficult to prove.

[Jack]

In my case, I was being treated (without success) for each of the symptoms as it arose and even referred to specialists, but they all failed to put the picture together. It would be hard to prove negligence, it is just that none of the doctors I saw seemed to be aware of Wegener's. This was over 25 years ago so perhaps things have improved a little by now?

[JanW]

It is the classic case of the "blind man describing the elephant" as was noted by several dove at the symposium. Again another reason, they thought, for having rheumy on your case since he is at least inclined to look at your case holistically. Neph may be a close second in dx wegs but many of us don't have kidney involvement.

Another saying: "it's more likely to be a rare manifestation of a common disease versus a common manifestation of a rare one." we are in the second group!

[coffeelover]

I dont advocate suing the noble profession, but I do side with Lila regarding a RHUEMATOLOGIST not evening considering the possibiity after numerous complaints by thier patients. Also ENT's should have a training in WEGS so that patients with obvious or not so obvious symptoms could have least do the research and be given the options for possible other avenues to help themselves.
coffeelover

[coffeelover]

btw sangye I tried to send you a private message and couldnt because your mailbox is full!!!! Just fyi

[Sangye]

LOL-- Thanks for the heads up, Lisa! Lotsa space for you, now.