Sjogren's mortality statistics

[iraisin]

I do a lot of research on this disease as I'm sure you all do as well. And as I do, I find that they don't expect this disease to cause death.

So I'm wondering, when it does, are they putting the complicating factor down on the autopsy report only - with no relation to Sjogren's?

If so, how would we go about changing that?

The way I see it, if it was shown to have more serious consequences than the internet eludes, wouldn't it be bumped up more in the way of taking the funding of research and better diagnosis to help resolve the issues with this disease?

Also, it would prompt those diagnosed to make changes to their lifestyle more seriously. And take better care of themselves, pay more attention to what their body is telling them they need and giving whatever it is to the proper care of their bodies.

I'm willing to write letters, prepare whatever arguments to put forward - but what institution would that be? If in fact they are only listing the complication that ultimately failed the body.

[slccom]

Autopsy? What autopsy? About the only ones that happen now involve crime, unless the family wants to pay for it. Any statistics are pretty suspect because of this, at best.

Sharon

[iraisin]

I see.

Well, then...cause of death has to be on the death certificate - someone has to identify that.

So would it be some sort of Coroner association?

[Nancy60]

Contacting the sjogren's foundation, american autoimmune disease association or other organizations involved in reasearch with specific requests might be beneficial.  To get more info on this researchers would likely do retrospective studies looking at already deceased Sjogren's patients and their cause of death, co-morbidities etc...and then run statistics on that info to get the stats you are wanting.  Patients need to be confirmed as having Sjogren's (and we all know that isn't always easy).  I believe there is a registry now in the US for Sjogren's patients and they help gather stats like this so if  you are confirmed as having Sjogren's, getting on the registry will help.

Nancy

[sass]

raisin,
I believe that your assumption is right on the money.. It is like asking... did the nail cause the tire to go flat or was it the hole?  Cause and effect?!?!!!! 

Even on my pathology report it never says caused by Sjogren's syndrome.  It says a complication of Sjogren's...inflammatory changes consistent with SS...and on the inflammatory infiltrates that include some granulomas, he says..."I think these are also compatible with SS".   

It suggests that I am suspected to have Sjogrens syndrome and that my mother apparently also had SS with lung involvement...(that she died from).  My actual lung pathology report lists my Dx as Constrictive Obliterative Bronchiolitis  AND  Airway and Inflammatory changes consistent with Sjogren syndrome.

Also small airway disease...with bronchioles that are smaller than their accompanying arteries....could be a complication of SS..

And just less than an hour ago, my home health nurse left here, with me shaking my head!! They come to change the dressing on my surgical incision and take vitals....She was asking me some routine questions and in an explanation, I said Sjogren's syndrome...She said what??? Could you spell that?? I have never heard of it before! 
AGAHST...was I!  Oh come on now!  A Home Health Nurse!  Gee Whiz!!

Well, of course she received the SASS101 on SJS!!!!   When she left, she said well, i have a bunch of stuff to go research!    you think?

to be continued....~sass~    gotta find something for you

[jazzlover]

Same thing with Lyme disease. Thousands die every year due to Lyme, but it's rarely on a death certificate.

You supposedly don't die from Parkinson's either, but my dad's family Dr wrote "Parkinson's" on the certificate. He died from sepsis.

[cargillwitch]

if my mother were to die today the cause of death would surely say primary biliary cirrhosis. However she has had sjogrens syndrome for longer than liver failure.

In many ways I see Sjogren's as a " gateway disease". It seems to morph into serious organ involvement in many individuals and then fall under another name- but still autoimmune in origin and still with the hallmark symptoms of sjogrens disease.

I have read many scientist and medical researchers are pushing to label all people with autoimmune disorders as having ' rhuematoid disease' with such -and -such involvement currently. That might work better , be more accurate and more fluid.

[sass]

http://sjogrensworld.org/forums/index.php?PHPSESSID=2e0239d2fee51fb3863397361e52df7e&board=1.0...

Since I cannot copy and paste you need to go here and Read the Connective Tissue Bronchiolitis Obliterans (on page 4..which this should take you too)  Dr Epler is a well respected world reknown pulmonlogist.    AT the end of his paper this is what he has to say:

FUTURE CONSIDERATIONS
my words..not his....that we need newlifesaving medications for unknown and CONNECTIVE TISSUE BRONCHIOLITIS OBLITERANS...You will have to go read his words!


You can email Dr. Epler with a question at gepler@comcast.net
__________________________________________________________________________------------------------------------------------------------------------------------------------
Ag
ain, in yet another of Dr Epler's papers (in 2008) he says..............
http://www.chestnet.org/accp/pccsu/constrictive-bronchiolitis-obliterans-what-do-we-know-about-fibrotic-airway-disease?page=0,3--------


scroll down to CONNECTIVE TISSUE CONSTRICTIVE BRONCHIOLITIS OLITERANS  and read that paragraph! 

 no published reports of the COB lesion in inflammatory myositis syndromes, mixed connective tissue disease, or Sjögren’s syndrome.

NO PUBLISHED REPORTS AND HE ACTUALLY USES THE WORD "SJOGREN'S SYNDROME" ADDED TO The Words---CONNECTIVE TISSUE DISEASE! 

In his 1st attachment you will read that THE CONNECTIVE TISSUE VARIETY OF "COB"  is considered to have a 3 year life expectancy.   

NO WAY!!!  3 YRS!!    I held my 14 month old twin granddaughters Callie and Kyndall, this past weekend and cried so hard.. Will I not get to see their 4th Birthday!  My 4 month old grandson, Hudson..3 yrs old...my wonderful Prayer Warrior 8 yr old grandson Hagen. Will not see him go to High School!

Well, of course, there is no way of knowing and I intend to fight like a banshee! God will provide for me under any circumstance...  I am working hard, now building my strength, losing weight, giving up bad stuff, the whole while the are pouring steroids and chemos down my throat to kill my immune system!

Did I know that there are COMPLICATIONS OF SJOGREN'S THAT MAY KILL ME!  well duh...NO!!!!!!  Did You???  Who Does!!   This is why you keep seeing me up on that band wagon, beating  my drum...Except it is not "The Sky is Falling"  I am Yelling!!   It is...WE HAVE SJOGREN'S SYNDROME....  SOMEBODY HELP US"     please..?

raisin , my pulmo doctor did say that I could not continue on steroids much longer...when my husband asked why...he said..."well at autopsy, her lungs will look great..but she won't! "

p.s.  a lot of you remember the birth of Callie and Kyndall and all the complications that went with it.  Callie was born with an extremley rare genetic disease called OAVS,  or bilateral macrostomia,,meaning her mouth was not closed in at the lips..giving her a very large orface..She has had repairs done and will need some more corrective surgery in the future. But for now she and Kyndall are beautiful and healthy!!       I only hope she is not following in her grandmother's footsteps.

Ring Your Bell,  iraisin, Ring Your Bell.....~sass~   let me know when you need me to carry it!

[slccom]

How do we get on a Sjogren's registry? I'm on one for temporal bones (for hearing loss research) and I would love to help with the research when I'm done with this body.

Sharon

[mshistory]

The stuff we read online even mentions RA as having potentially fatal complications... but not SjS??? I think a good first step would be dropping "syndrome" from the name of this disease. When I think of syndrome, I think of something more like fibromyalgia - not an autoimmune disease that we know causes serious gland and organ damage.

And Sass, for you (((HUGS))).

[irish]

First of all, do not ever take any predicted life expectancy to heart. They are all guessing. There is no way on God's green earth that anyone can predict when someone is going to die except God.

When we read that kind of stuff it just raises all kinds of stress in us and I think it is the stress that kills us.

Example, Look up COPD (which my hubby has plus a bunch of other things that are life threatening.). The COPD info states that someone with very severe, stage 4 or end stage COPD will die within 5 years of having been diagnosed with end stage. Then they go on to state that this is true-sometimes. Other people who take care of themselves and keep busy with their life have been known to live 10 years. It is a crap shoot.

Live your life, take care of yourself, don't become negative, keep busy,etc and take what is handed to you. This is the way we should all lead of lives. None of us know if we will get hit by a bus stepping off the curb when we go to the mall.

Regarding info on the death certificate. Autopsies are only done when ordered by the medical examiner or requested by the family. To my knowledge!!! They are costly and the medical examiners are usually way too busy to do a post on everyone who dies.

Also, they examine the body, request the medical history from the family and generally someone from the family is able to talk with the coroner or doctor and the health status and probably ( I repeat) probable cause of death is assigned to the certificate. Be aware that many of the reasons for death will be vague---such as CHF or CAD---which is congestive heart failure and coronary artery disease. Sometimes the cause of death will be kidney failure. It can be kidney failure, but if heart failure comes first this can cause the kidney failure.

It is really hard to "assign blame" or nail a cause of death in all cases. Generally people with autoimmune disease have more than one disease. So how does the doctor know for sure which one is to cause. I would think that the term example---Pulmonary fibrosis associated with autoiimmune disease would be a far safer method of listing a death. Acknowledge the biggest problem and bum/w autoimmune cause heavens only knows there could be scleroderma in the lungs that might not even have been addressed.

These autoimmune diseases may well be all under that umbrella someday with less attention paid to the names of sjogrens, lupus, etc. Since I graduated from nursing the AID have started to melt together as if they are all from the same pot and they all have so many symptoms that are alike or similar.

The truth is that every time they find out something researching lupus, scleroderma or any of the other many diseases the new info may apply to all AID or a whole lot more than just the one that was being researched. We all have to be patient and no panic in order to get through this life with out wasting our energy on false hopes or misinformation. Smile folks cause it ain't over yet.

P.S. My husbands uncle was told in 1964 that he had lymphoma and to sell the farm and get ready to die. He had some radiation and sold the farm. He died in 1986 at age 84 from lupus that was precipitated by one of his rarely used heart medications. He couldn't take the normal heart meds and they had to other choice but to give him that med.  Life is not predictable!!!

[Nancy60]

The Registry I was talking about is an International Registry, not National, but they have US locations at Johns Hopkins, Philadelphia (U of P), and San Francisco (UCSF).  I am attatching a link for anyone interested:

http://sicca.ucsf.edu/intl.html

Nancy

[iraisin]

Irish, I understand what you're saying and it is true as it stands alone. What I was thinking though, was if identifying the "cause of the hole" along with the "nail" or plain ole identifying the cause as the "nail" would it not offer more leverage for researches to apply for grants to research this disease. Also put a tack in the seat of researches and prompt them to look into it more aggressively. And last, but not least, engage more interest and awareness for this disease.

All that, would get us closer to medications and treatment that help fight, maybe even cure this disease.

I was looking for a proactive approach to leverage research and support for said research. Certainly not to start a despair amongst us all.

I think, based on what I've witnessed on this board, the diagnosis and criteria is a problem, the treatment is lacking, and the awareness darn nil.

So this was meant to be productive - not dismaying.

Sorry if it was perceived that way.

[Java500]

I might reach out to NAME -- the National Association of Medical Examiners -- or try to speak to your local medical examiner.  He or she would be a great starting point for your questions, and NAME might already have had it addressed in one of their annual conference presentations.

[iraisin]

Thank you for the leads, ladies. I will send out some e-mails and pose the questions.