Harold Ramis dies from complications due to Vasculitis

[Pierre42]

Not sure if anyone here has noticed it, but actor Harold Ramis (Dr Egon Spengler in Ghostbusters, etc) has died from complications due to Vasculitis.

Major news worldwide, people all over are suddenly asking "what is vasculitis".

[julia]

Big news around here. Wonder what form, He lived close to where I am, sounds like was a nice man.

[Dirty Don]

Sad that it took him finally, good that he was famous...

[Psyborg]

Sad that it took him finally, good that he was famous...

I was wondering what the form was myself. The articles just say Vasculits...though they reference the VF so there is that.

[NicShaf]

Very sad. Even the Vasculitis Foundation site doesn't specify what form of Vasculitis he had.

[annekat]

Perhaps the VF doesn't know what kind he had. It appears that whoever does know is not sharing it, or whoever it is shared with cannot digest such a long and hard-to-spell name. It does seem surprising that the VF wouldn't name the type. I suppose it matters to us more than anyone.... but vasculitis is vasculitis, and to find a cure, perhaps it needs to be looked at as a whole and not just as individual rare diseases. However, I, too, would like to know what type he had, and perhaps it will still come out.

[NicShaf]

Perhaps the VF doesn't know what kind he had. It appears that whoever does know is not sharing it, or whoever it is shared with cannot digest such a long and hard-to-spell name. It does seem surprising that the VF wouldn't name the type. I suppose it matters to us more than anyone.... but vasculitis is vasculitis, and to find a cure, perhaps it needs to be looked at as a whole and not just as individual rare diseases. However, I, too, would like to know what type he had, and perhaps it will still come out.
Good point, when grouping all the forms of Vasculitis together to create the impact each individual disease would not...it probably only matters to those of us with a form of Vasculitis. Either way, my prayers go out to his family.

[annekat]

Good point, when grouping all the forms of Vasculitis together to create the impact each individual disease would not...it probably only matters to those of us with a form of Vasculitis. Either way, my prayers go out to his family. That is what Marta is trying to do with her Find the Common Thread campaign, to get awareness for all autoimmune diseases as a group, including the different forms of vasculitis, so that perhaps the similarities in cause can be discovered and similar approaches to a cure can be found for all of them. Her work can be found in searches on the web or on this site. Friday is Rare Disease Day and many activities are planned.

I also send out my prayers to his friends, of which I'm sure there are many, and his family.

[marta]

Harold Ramis is helping us from the other side by starting the conversation.

We are all Weggies (although some don't like that name, I use it because I feel more control over the situation if I call myself a Weggie). We are all Vascies too, part of Vasculitis. We are all part of Rare Disease Group, but what's causing all our illnesses is Autoimmune Disease. If we find the cause of that we will have a cure for Vasculitis, many Rare Diseases and Wegeners's Granulomatosis and so will others in our family (since they know that Autiommune has a genetic component.) Lowest common denominator is Autoimmune Disease.

So go out (only when you have enough energy) and bang your drum from whatever circle you feel most comfortable in, but bang that drum or nothing will change.

Find The Common Thread | the first little ripple towards finding a common thread to autoimmunity (http://www.findthecommonthread.com)

[Dirty Don]

Harold Ramis is helping us from the other side by starting the conversation.

There's something ironically appropriate to this...who ya gonna call?

[Alysia]

So go out (only when you have enough energy) and bang your drum from whatever circle you feel most comfortable in, but bang that drum or nothing will change.


I like your spirit marta :thumbup:

In Israel we are even more rare (or should I be happy for that?) even when writing about Ramis, all what was written in Hebrew was: "he died from rare auto-immune disease". no more.
I was visiting very old and expreinced reumatologist lately, and asked him how many weggies he met. he said: 3 or 4.
hugs to you :hug3: and to Rini :hug3:

[marta]

There's something ironically appropriate to this...who ya gonna call?
No kidding... I was thinking the exact same thing.

[marta]

I like your spirit marta :thumbup:

In Israel we are even more rare (or should I be happy for that?) even when writing about Ramis, all what was written in Hebrew was: "he died from rare auto-immune disease". no more.
I was visiting very old and expreinced reumatologist lately, and asked him how many weggies he met. he said: 3 or 4.
hugs to you :hug3: and to Rini :hug3:

Hugs back to you Alysia.

I saw a neurologist once and he told me this " If you want to get a doctor's attention quickly, just tell them you have Wegener's Granulomatosis." What I know and he doesn't is that this is only applicable to good doctors, the not so good ones don't know what it is.

This makes me think of a joke my daughter's ski coach told me a couple of weeks ago.

Q:What do you call the medical school grad with the lowest grades?
A: Doctor.

Yup, we've all met one or two of those in our journeys.

[pberggren1]

My drum is probably the biggest around. Everyone knows I have Wegs.

[annekat]

My drum is probably the biggest around. Everyone knows I have Wegs. It's good they should know. The more people who know about it the better. I get so sick of people who, when I tell them what I have, say "I've never heard of it". The implication being that if they haven't heard of it must not be too big a deal. Except for the ones who show a genuine interest and want to hear about it. I have started saying "vasculitis" because it is easier for people to remember than any of the names for WG. Then, they may be able to go home and look it up on the internet and get the wits scared out of them.

[Alysia]

My drum is probably the biggest around. Everyone knows I have Wegs.

mine is prob the smallest :blushing: even my parents and my brother and sister, don't "catch" it enough. just 2-3 good friends know more, but only few details.
I am not telling about it. I also don't want my patients to know about it because I have to be there for them "selfless". and it is my privacy.
so I live in 2 worlds: the environemental one, and my weggie world. if I didn't have my weggie world, I couldn't have made it. I just posted about it here.

[annekat]

I'm behind you on that, Alysia. It is a personal decision and you have good reasons for making that choice. There are enough of us out here blabbing about our Wegs.

[chrisTIn@]

I saw a neurologist once and he told me this " If you want to get a doctor's attention quickly, just tell them you have Wegener's Granulomatosis."

I was in the hospital yesterday, for an investigation of another problem. (I was afraid I had breastcancer. Lucky for me it turned out to be something innocent...)
The nurse asked me a lot of questions, for example about other diseases I could possibly have.. I told her I have Wegeners, and that lead to the immediate appearance of the oncological surgeon when I asked for that. Otherwise
the nurse would have probably ignored most of my comments, as she seemed to hold on to the protocol as usual.
So yes... The term 'Wegeners granulomatosis' opens medical doors. Doctors are curious most of the time, as most of them -in regular hospitals- have never seen a patient with Wegeners.
To people in a non-medical setting I mostly tell that I have an auto-immune-disease. Then you see them think a while, and eventually nod. Yes...they have an image of what it is like to have an auto-immune-disease.
But they never have a clue of what it is like to have Wegeners. So I don't mention it anymore, most of the time.

[annekat]

I actually talk about it on here a WHOLE lot more than anywhere else. I can't expect it to really register with people in everyday life. The main time I find myself mentioning it is when people remark on my coughing and I have to reassure them that I don't have a cold or anything contagious. I'm not even sure if they believe me. Even my own family members are pretty dense about realizing how it affects my life. As long as I "seem OK" during the brief visits with them, they don't think there is much to worry about. I can't really expect more of them, but certainly do take any opportunities to point out to them (family members, that is) how WG is affecting me on a given day. They also should be aware of the ways in which things could get worse, but it is hard to bring up those negatives, or have them sink in, when things seem "ok".

[ingemlb]

Very interesting discussion in this thread. I belong to a forum which is just about "Autoimmune disease" and their claims are each and every one of the Autoimmune diseases has a common cause. Nearly all the Autoimmune Diseases and chronic diseases in general are represented in that forum except so far I am the only one with a Wegener's Diagnosis. The forum stressed that the diagnosis is not so critical. When you check symptoms it turns out that 90% or more of the symptoms are shared by all no matter what the main disease is. They believe firmly in a cure that has been developed as a result of loads of recent research based on papers published and research into the Human Genome. Most of the people on the Forum are seeing incredible results. I too initially had a lot of things being reversers. The science behind it states that what causes Autoimmune Disease are intra cellular bacteria which work together and infiltrate the immune system thereby hiding from in and crippling it at the same time. The treatment is diametrically opposed to all forms of conventional treatments for Auto Immune disease. Instead of Immunosuppressive it is Immunostimulative.
So why am I here with Wegener's? That's the million dollar question. Is Wegener's or Vasculitis in general behaving a bit differently than all the other Autoimmune Diseases? Is it also a connective tissue disease? Because my first 3 years on the treatment were difficult but giving results then from 2009 I started collecting new issues. My current GP has gone on a different track. He believes Lymes is behind everything and finding all his patience test positive for Lymes. That does not go with the information I have learnt because it is now known no ONE bug can cause the immune system to shut up shop but a multitude working together. Some of these we are born with, we get them from our Mothers via egg, womb, placenta and the birth canal, from our Father via the sperm. Then on top of that we are exposed to lots of different ones due to environment, infections, immunisations. It is unknown in which order they need to hit us and how many of them we need to end up becoming chronically ill and our immune system is overloaded and shuts down. We know they work together and each change our cells/dna in some way to make it easier for the next bug to move in. They are not picked up easily being cell wall deficient so the microscopes don't find them. We are told that there are more cells in the human body that are not human (by a factor of 10) than human cells. Here is one quote from a recent paper.
"The genes of the microbiota number in the millions,dwarfing the 20,500 that comprise the human genome The genes of these microbial inhabitants interact so often with our own that human beings are best described as "super organisms" Anyway I have lots of papers and links I can pass on to anyone interested in this.
Fact is after 7 years I am off the other protocol and back on conventional treatment but I am in the minority for those who tried the other treatment. However it may well be that the time I spent on the treatment protected my organs and hence it has been so difficult to diagnose this disease. Jury out on this. Time may tell :( Inge

[mishb]

Unfortunately in the case of Wegeners, of you stimulate the immune system instead of suppressing it, then you will awaken the creature from within (we like to call the dog) and your symptoms will get worse and even attack other, previously untouched, organs.

[ingemlb]

Yes well that's the big issue in my case. I overstimulated the immune system by being too aggressive with my try to get fit and lose weight scheme in 2009 and I never managed to calm it down again. I had no idea then re Wegener's and most likely I activated/stimulated the disease by being impatient. The immunostimulative route is meant to be a VERY SLOW route to recovery because as everyone here probably knows the immune system can do a lot of damage if out of control. At the same time I was taking drugs that protect the organs so I think that somewhat slowed down the damage being caused. I was constantly warned to be very careful as my symptoms showed I was very ill however I was never quite convinced until I started to get all these other problems :( So I learnt the hard way. I badly needed the Prednisolone to knock out my immune system. Was the only way to slow it down. Now I have to learn from scratch. Strange thing is people are being cured from all sorts of things by this other protocol and like I said before I was totally stumped when all these new symptoms cropped up. I guess Wegener's is far more aggressive than most of the others. Probably a bit like MSA (Multiple System Atrophy) which very quickly killed my father in 2005. Anyway I am learning heaps here so am very glad I found this forum. inge :)

[drz]

They believe firmly in a cure that has been developed as a result of loads of recent research based on papers published and research into the Human Genome. Most of the people on the Forum are seeing incredible results. I too initially had a lot of things being reversers. The science behind it states that what causes Autoimmune Disease are intra cellular bacteria which work together and infiltrate the immune system thereby hiding from in and crippling it at the same time. The treatment is diametrically opposed to all forms of conventional treatments for Auto Immune disease. Instead of Immunosuppressive it is Immunostimulative.

He believes Lymes is behind everything and finding all his patience test positive for Lymes. That does not go with the information I have learnt because it is now known no ONE bug can cause the immune system to shut up shop but a multitude working together. Some of these we are born with, we get them from our Mothers via egg, womb, placenta and the birth canal, from our Father via the sperm. Then on top of that we are exposed to lots of different ones due to environment, infections, immunisations. It is unknown in which order they need to hit us and how many of them we need to end up becoming chronically ill and our immune system is overloaded and shuts down. We know they work together and each change our cells/dna in some way to make it easier for the next bug to move in. They are not picked up easily being cell wall deficient :( Inge


I asked my expert at Mayo who who is often one of the main authors on many GPA research if he saw any likely cures for GPA and other auto immune diseases in the near future. If there was a way to find all the broken cells that have faulty programming that causes them to attack healthy cells and erase them and replace them with new ones without the broken programming, they could cure all autoimmune diseases but there is no promising ideas or research now that seem likely to lead to this possibility any time soon. Zevalin can find all cancer cells for people with lymphoma and kill them but there is nothing yet close to doing this for autoimmune diseases. Al's dream was that they would some day find a way to reprogram out broken immune system and some research on a very small scale has been encouraging but no break throughs yet in this area.

I was treated and tested for Lyme's disease several times after tick bites during my early stages of Wegs when joint pains became my second symptom to bother me. I never tested positive for Lyme's disease but the joint pain progressed and other symptoms developed that eventually lead to my being hospitalized and finally diagnosed correctly with GPA in time so I could receive the proper treatment that enabled me to survive. So I would strongly disagree with your GP that Lyme's disease is behind GPA. I did have an insect bite that might have caused an infection which could have contributed to me developing GPA as we believe that infections, stress, and exposure to pollutants might trigger development of GPA. I know of several people who became severely disable from Lyme's disease after tick bites. Lyme's disease can mess up one's immune system and the vaccine developed for it was with drawn cause it also had this undesired side effect in a number of people so there may be some similarities in how Lyme's disease and other autoimmune diseases attack our bodies.

[ingemlb]

Thanks DRZ. The treatment I was on has not yet hit mainstream. It is an internet based study trial but a lot of medical professionals world wide and scientist as well as patients are taking part of it. It is getting a lot of exposure at Autoimmune conferences world wide. Has not yet hit clinical trial stage as it requires lifestyle changes that would be difficult to disguise in a double blind style trial. In fact it's impossible. There are groups of doctors in Norway involved. Russia is taking part in research and a hospital in china is trialling it on quite a number of patients. Many of the medical professionals who are part of the team are also on the protocol as they are suffering from autoimmune disease. Some of the published papers sound very promising but I reckon it will take another generation before it will be widely known. The FDA are also monitoring the study group. So there is a lot of hope. I think I made it worse by being too aggressive with it. They have many patients with Lymes doing very well on it. But as I found nobody with Wegener's I decided to come off it and go the conventional route as it was critical I slowed down my over stimulated immune system. Of course what I will never find out is had I taken everyone's advise and proceeded with much more caution ... would I have ended up in this mess? As there are no others with Wegener's who tried it I have nothing to compare against :( Anyway all I can hope now is that I caught this early enough and that dampening the immune system with the steroids will slow things down and hope for remission. I am still glad I participated in the study group and I am still posting my progress as they like to hear how people progress even after leaving the protocol. They team have also been very supportive and agreed I need to slow down my immune system. So I will keep an eye on how things continue but as far as treatment goes will have to stick with what my Specialists want me to try.
The Lymes is a bigger debate in Australia. Our government doesn't believe our ticks carry the bugs. Apparently they tested them all??? And the medical profession doesn't believe there is anyone here with Chronic Lymes. So my GP is on a mission to prove them wrong as he has been sending blood tests to Germany and even though people are testing negative for Lymes here they are coming back with positive results from the German lab. He believes our labs are not used to testing for Lymes so getting it wrong. Anyway I didn't do the test as it costs a fortune sending the blood overseas. And now I am not interested in doing it at all. I wills tick to this treatment and see how it works.

[Wegetarian]

I saw a neurologist once and he told me this " If you want to get a doctor's attention quickly, just tell them you have Wegener's Granulomatosis." What I know and he doesn't is that this is only applicable to good doctors, the not so good ones don't know what it is.


This even works for my spouse. She went to the hospital without an appointment, and the wait would be many hours. Then they called her in and said they'd take her since she has Weg's and they might need to run some tests for her condition. Turns out there was a mention about my Weg's in her file so they assumed she had it.

i've also felt that I've gotten a lot better service when mentioning that I have Wegs. Although before that last summer I mentioned my brain surgery, that always got a lot of attention so I immediately got a time for a doctors appointment instead of having to go and wait to talk to a nurse.

[Michael Bell]

Hi, is'nt it amazing how quickly some doctors will see you when you have an interisting illness. I think they just get fed up treating people with colds.
Mike

[drz]

Hi, is'nt it amazing how quickly some doctors will see you when you have an interisting illness. I think they just get fed up treating people with colds.
Mike

Many doctors though have never heard about it and have no clue what it is about. I would question the value of seeing one of them unless you are pretty sure what needs to be done, like testing your inflammation markers or for infections etc. My regular doctors though who know about my diagnosis all sound very willing to see me quickly if I express a urgent need for evaluation. I believe they know problems can become very serious quickly when one has a chronic illness like Wegs.

[windchime]

When I went to the ER in January I told them I had Wegs and got in right away. When I saw the attending who was following up on his residents he told me they had called my Pulmonary doc for advice. I was very happy to hear that.