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Sjogrens Topics => Living With Sjogren's => Topic started by: iraisin on July 27, 2012, 10:12:55 AM

Title: Sjogren's mortality statistics
Post by: iraisin on July 27, 2012, 10:12:55 AM
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.
Title: Re: Sjogren's mortality statistics
Post by: slccom on July 27, 2012, 10:17:44 AM
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
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 27, 2012, 10:21:53 AM
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?
Title: Re: Sjogren's mortality statistics
Post by: Nancy60 on July 27, 2012, 10:28:18 AM
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
Title: Re: Sjogren's mortality statistics
Post by: sass on July 27, 2012, 10:32:28 AM
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
Title: Re: Sjogren's mortality statistics
Post by: jazzlover on July 27, 2012, 11:14:53 AM
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.
Title: Re: Sjogren's mortality statistics
Post by: cargillwitch on July 27, 2012, 11:20:57 AM
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.
Title: Re: Sjogren's mortality statistics
Post by: sass on July 27, 2012, 11:29:34 AM
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!
Title: Re: Sjogren's mortality statistics
Post by: slccom on July 27, 2012, 02:17:34 PM
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
Title: Re: Sjogren's mortality statistics
Post by: mshistory on July 27, 2012, 02:23:06 PM
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))).
Title: Re: Sjogren's mortality statistics
Post by: irish on July 27, 2012, 02:45:37 PM
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!!!
Title: Re: Sjogren's mortality statistics
Post by: Nancy60 on July 27, 2012, 03:04:10 PM
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
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 27, 2012, 03:32:11 PM
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.
Title: Re: Sjogren's mortality statistics
Post by: Java500 on July 27, 2012, 03:50:34 PM
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.
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 27, 2012, 03:53:09 PM
Thank you for the leads, ladies. I will send out some e-mails and pose the questions.
Title: Re: Sjogren's mortality statistics
Post by: Scottietottie on July 27, 2012, 05:51:48 PM
Hi iraisin

Personally I believe that MOST cases of SjS are not terminal. I actually believe the information leaflets given out by various health authorities. I don't believe they could get away withy their information leaflets if they were all lies. Many sjoggies never develop neurological symptoms or GI symptoms. I kinow from here - that a lot do - but the forum is still a minority of sjoggies. I also believe that some cases of SjS are terminal and that they are the unfortunate minority. Asthma can be fatal but most asthmatics do not die of asthma. It can be managed - and so it can be for most people with Sjogren's.

I am not trying to minimise the impact of the condition but I do believe that many people come here for information and then go on to 'manage' and leave because they don't need the forum any more. The people who stay seem to be those who are hardest hit.

Take care - Scottie
Title: Re: Sjogren's mortality statistics
Post by: sass on July 27, 2012, 08:59:25 PM
 I do not put much into the life expectancy of 3 yrs.I intend to fight and remain strong and active. I do not think that they have any idea especially if this is so rare and no studies are being done much on the connective tissue side of it.  How can they predict it.  I only go by what I am being told.   
 I know that what I have is caused by Sjogrens.  In fact , the first and only words my pulmo said to me when he looked at my CT scan was..."this is not IPF...THIS IS SJOGREN'S"  and I have it by 4 separate top doctors in one of the worlds top Hospital's and another from The Mayo Clinic. And I  feel strange being called  one of the "unfortunate minority. "

I am not trying to bring any undue stress to anyone at all.  And Ya'll if I have I am truly sorry.  I guess I felt that I could open up and get support here while I am going thru this trial.  So again my apologies if I have offended anyone or made them stressed.  I am trying to bring awareness to a disease that much like Breast Cancer at one time and Heart Disease in Women has been overlooked and understudied.  I only wish that I could do more. 

My daughter has Asthma, has had what is called True Asthma since birth on..and yes it can be managed, but that makes it sound so simple.  Breathing treatments, management medications, Resource Inhalers, Humidity Avoidance, Inability to Run with Your Children, Multiple Trips to the ER, Adrenaline shots to start breathing, suction tubes ran down the mouth and nose, Oxygen tents, profuse sweating, reaction to medications, other medications to help counter act the firsts. ICU, Collapsing running bases at your high school softball game, ICU, going into respiratory distress while in labor,  and yes it can be managed- but I think most of us here are trying to manage, but obviously reading what I read here  most people are not managing. 

I realize that we are only a drop in the bucket of Sjoggie's, but those numbers can be misleading  as each and everyone one of us suffer daily.  Every Day!  And I don't believe that the people that stay here are just because we are the hardest hit. I think we feel like we are at home to express something to someone that understands.

Now maybe some have it easier than others and it is just not as painful or life altering.  I stay here to offer support and to try to bring more awareness thru my stories and experiences.   I am acutely aware of what Sjogrens can do to just one random person.  And I want there to not be another.  I try to brinq a positive sense humor along.  I LOVE TO LAUGH!

But I can't stand by and not say what Sjogren's CAN DO to just one unfortunate person..  It is not just that tablespoon of information saying we have dry eyes, mouth, etc.  It is so much more...Why do we get Brain Fog and feel like our memories are slipping.  No Way to answer that.  Could be age, I just know that everyone mentions it.  i am not a nurse nor a doctor.  But experience is all I have.   I love this Forum and the people here.  And I thank you all for reaching out to me.....~sass~
Title: Re: Sjogren's mortality statistics
Post by: irish on July 27, 2012, 09:11:55 PM
My post was meant to point out that telling a patient a specific date in regards to death is not very fair. Besides, it is my understanding that most people will have an inkling that there time is short. Setting a date only makes for more stress.

Being this specific is almost cruel---I am in favor of a doctor telling someone that they have a chance of passing away sooner than later and to make sure they have their affairs in order. (an example) Setting a date can be very disconcerting to a patient. Some patients actually die sooner because they have been told they will. The will to live is something that is very fragile and some people can't deal with the specific information. Irish
Title: Re: Sjogren's mortality statistics
Post by: eyeamdry on July 27, 2012, 09:20:41 PM
Having had both, I still say cancer is way, way worse than Sjogrens and most other diseases.  We are all created equal when it comes to diseases.  Lucy
Title: Re: Sjogren's mortality statistics
Post by: sass on July 27, 2012, 09:33:04 PM
Yes, Lucy I must agree.  Cancer is horrible, mean and and unfair. I am sorry that you have had  to struggle with both.  sass
Title: Re: Sjogren's mortality statistics
Post by: KarenR on July 28, 2012, 12:53:18 AM
About a year or so ago I read an obituary of a woman and it said she died of complications of Sjogren's disease. I really wished that I knew her family so I could as them for more information.
Title: Re: Sjogren's mortality statistics
Post by: harrigan on July 28, 2012, 01:57:34 AM
Thankyou, Irish!  Focus on living with what you've got, not dying with it.  I've got the disease but it not got me.  xx Ailsa
Title: Re: Sjogren's mortality statistics
Post by: sass on July 28, 2012, 04:47:58 AM
Karen, oh i wish you could remember too.  Would be helpful.

Irish, I totally agree that it is cruel and should not be said.  I only mention these things because I think that we need to bring more awareness to some of the possibilities of complications of Sjogrens syndrome. There needs to be a wake call of sorts.

 By no means will this define ME.. I am in the early stages of Constrictive Bronchiolitis.  I am a happy, tough and a fighter.  And you will go far to find someone more positive and loves to live life than me.  Now, I will admit that I have had some weak moments that things cross my mind and especially with the prednisone on board I have a breakdown.  That is one of those times that I really need you guys here. To prop me back up.

But, I bounce back pretty quick.  And when I do, I would be remiss to hide the information at my hands and not share it with others.  Do I always do it in the right form..probably not, as I am human and get passionate about really truly wanting to help others.  And I have and will always feel that education and information is imperative in helping fight for a cause or have joy in a birth or have the right way to treat a wound. 

I also know that I am one of the minority that information on these illnesses or not scary for the most part to me.  I find some much of it fascinating and helpful. 

And harrigan, I focus on living each and every second with laughter and joy.  Sjogren's does not have me, but a complication of Sjogrens has my lungs.  And I am not going to allow it to define me. I will beat it and go on to tell the world of God's miracles.
 
He has brought me through 2 brain tumors, cancer, several diseases of the autoimmune, given me two absolutely wonderful children that back then I was told would never happen, I seek ed out a doctor that helped me work through it .  I could go on, but none of that is what is important.  I LOVE MY LIFE AND EVERYONE IN IT! 

And I have to say again that there are so many issues with Sjogrens that because of the lack of studies being done, that are being overlooked or swept under the rug.  Why, here on Sjogrens World if you for to the Home page, and click on CNS articles you will read about so many right HERE. Which in fact is where I get most of my information and then that leads to to the links that are posted. 

I feel like when you do  a Goggle on Sjogrens syndrome and read that it causes dry mouth and dry eyes and can effect your saliva, well no wonder people have thought this syndrome is nothing. Even the word syndrome, In medicine and psychology, a syndrome is the association of several clinically recognizable features.

So when I read of the suffering that so many here do, (a drop in the bucket) the flairs, the loss of jobs and homes and time with their families and mostly the guilt that they have that goes with all of that and then adding that I KNOW SOME OF THE WAYS SJOGRENS CAN DAMAGE, yes I feel a greatly ignored. And quite possibly there are all kinds of studies being done that I am aware of.  But the explanations to the General Public with and without Sjogrens needs to be adjusted.  Our White Blood Cells are DESTROYING our autoimmune systems.  Some peoples are doing it slow and easy and some are doing it with a vengeance.  That is exactly why I am focusing on LIVING with what I've got, not dying with it.  But I want that for every single person that has any kind of disease.

As an advocate , I have a responsibility to help others.  It is my calling and my mission in life.  And I gotta say it's a durn good one..and it is a most excellent life!  ~sass~

sorry iraisin for stealing in on your thread. 
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 28, 2012, 04:52:27 AM
Sorry I got everyone upset.

Really in truly, I just want more research. I work in an environment that does research as a base of the organization. I know numbers and data matter very much as to what gets put on the top of the ledger of line items.

I just want more information out there and truth in numbers (not that the leaflets are lies, they are facts based on the data they have).

Having the true data out there, doesn't mean we will be worse than we are, we are going to have what we have and follow the track of our disease regardless - it just has true, more precise numbers for better research.

That's all. I believe in good numbers and MORE data. I've chased too many wild geese when I've been given bad numbers and you get no where with that.
Title: Re: Sjogren's mortality statistics
Post by: sass on July 28, 2012, 04:55:20 AM
iraisin, Very well said...Bravo! 
Title: Re: Sjogren's mortality statistics
Post by: mshistory on July 28, 2012, 06:13:09 AM
I do think we need more recognition of complications from SjS. We're told it's a systemic disease, so of course it can affect any part of our body! Perhaps recognizing that complications from SjS are potentially fatal will prompt more research into this disease. I don't think fatal complications are as common as with Lupus but they happen, and we need to be aware of them. My rheumatologist told me there's so much disagreement among rheumatologists over what SjS causes and what should be attributed to a different disease process - even our specialists don't know! I think that's concerning.

I think this website sums up SjS pretty well:
http://www.sjogrensnewzealand.co.nz/article-5.htm

Title: Re: Sjogren's mortality statistics
Post by: sass on July 28, 2012, 06:25:35 AM
mshistory:

I love you forever.  That link is most amazing!  I started 4 sentences now and can't seem to find the words!  Thank You, Thank You is all I can say!  You my friend are brilliant!

i am so excited that I am about to pee my pants!!! kidding   ~sass~
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 28, 2012, 07:16:51 AM
So far, I have sent NAME and Dr. Eplar letters. I will keep you apprised, so if you are interested stay tuned. I will continue to send letters to the other suggested establishments.

I'm just not the type to sit and wait. Think of all the other diseases that would not have support if folks did that. I have two children and 7 sisters. Think of all of those future people in just my family alone that future studies and more awareness could help.

I don't want my yet unborn grandbabies suffering needlessly if there is an opportunity to find answers and better treatment for this.

Yes, cancer is worse - in fact there are many diseases that are worse, but that doesn't make this disease less inhibiting to those that have it - it is still significant in its own right and debilitating for some. And that "some" may be too weak or limited in some way to prompt change...or otherwise just burnt out and too darn tired of it all.

Change can be progress. How will that happen if we don't start working toward it in some way. It is up to us, the patients, to speak up; push our dr.s; ask for better criteria and prove that need; write letters; promote awareness; etc. We have the most at stake and the most to gain, not to mention, we are the most passionate about it.

So back to my original post - I am not trying to identify the "date" of death for any individual with Sjogren's, just better more accurate data as to the cause of death and whether it is originating from Sjogren's or something else.
Title: Re: Sjogren's mortality statistics
Post by: Gayle on July 28, 2012, 07:26:53 AM
MS - Great Article, thanks for sharing!!

Iraisin! You go woman! Let me know what, if anything I can do! I agree completely!
Title: Re: Sjogren's mortality statistics
Post by: Diane63 on July 28, 2012, 02:18:16 PM
I am 63 yrs old and have made arrangements to have my body donated to the medical school at our nearby university.  I am not expecting to head down that road anytime soon, but am keeping a record of this Sjogren's thing - dx, treatments, personal insights (such as they are :)) and so on.  I have talked to the med school and they are going to accept my humble record of experience which my family will give them at the time of my death.  It would be great if one of you comes up with a national or state organization that could do what you've talked about.  I was thinking that med schools are one good place to go to for folks that REALLY need an education about Sjogren's.  There's probably a national association of some kind for med schools.  Just an aside - I find it interesting that I can type multiple sclerosis or cancer or other diseases on this thing with no problem - but every time I type Sjogren's I get a big red line that indicates the program never heard of it and doesn't know how to spell it!

Diane63
Title: Re: Sjogren's mortality statistics
Post by: Suslew on July 28, 2012, 03:05:57 PM
Sass,
Great idea and I am sorry to hear of your trials, I know you'll stay strong based on your posts that I've read.  I agree with your idea of brining awareness to this disease and had a thought.  I just looked and There are quite a few posts on pinterest in regards to SS, which strikes me as a good way to get the word out.  I think I'll add a Sjogren's board to my page (under Susanne Berglund) and I'd love to follow anyone who does the same.  This would be educational for those that follow our pinterest posts.
Title: Re: Sjogren's mortality statistics
Post by: sass on July 28, 2012, 03:09:59 PM
Diane63,
since I was very young I have always said that I wanted to donate my body to science, although at this time, the way I keep racking up diseases it may be more confusing thaopen helpful.lol
You have opened the door and I am going to step through it.  I plan on contacting The Mayo Clinic in Scottsdale, AZ to see if they have a program.  Thank You for making this post.
Now I need to start a journal.  I recently bought a program for my computer called "Record Tree"  Personal Management Software  .  I now begin the daunting task of entering my history.  It will be a big bonus though as I can take the information with me wherever I go..
I also intend on keeping a written journal of my progress and thoughts as I go through this wonderful life.  It is gonna be a really long journal..~sass~
Title: Re: Sjogren's mortality statistics
Post by: sass on July 28, 2012, 03:14:02 PM
susiew,

i will see you there, look for me to follow you!  What a great idea!  ~sass~
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 28, 2012, 05:22:44 PM
Just got a response back from Dr. Eplar
*********************************
Dear [name deleted] ? I cannot explain what?s going on, but most important, you are making positive change.
I wish you continued success in your work and with the Sjorgren?s Warriors..
Gary Epler
Boston
******************

No help there evidently. So I march on.

++++++++++++++

This is the letter I sent
*******************

Dear: Dr. Epler
 
I suffer from Sjogren's and am a member of a patient forum called Sjogren's World. We all do research and all the information we find states that Sjogren's is not a "killer".
 
So, since I know many that are in fact dying of Sjogren's I am posing these questions to you.
 
Is it only noted on death certificates the function that failed the body and not Sjogren's - even if that failed function failed or deformed from years of suffering from Sjogren's?
 
And if this is the case, how will those diagnosed by Sjogren's truly understand how important it is to be proactive about treatment?
 
How are researches going to leverage the need for funding and grants if Sjogren's is never identified as a fatal illness?
 
How can the criteria ever be modified for easier diagnosis if people (doctors, researchers, etc) aren't realising that this is a serious illness.
 
One of my friends has had Sjogren's for many, many years. Her lip biopsy was negative, her blood was negative, but she is suffering nontheless from a lung disease specific to Sjogren's (Constrictive Obliterative Bronchialitis) - this has been documented by specialists in Houston and Arizona (in her case specifically) Mayo Clinic in Scotssdale, AZ. Dr. Thomas Colby (noted in his surgical pathology reports)
 
I think the lack in medical knowledge, public awareness, and patient education is relatively poor because of how the cause of death is identified thus making the mortality rates look minimal and any research that is lacking is okay since Sjogren's is not a "lethal" disease.
 
Please explain to me what is going on and how do we change it.
 
Very Respectfully,
[name deleted]
Sjogren's Warrior
Title: Re: Sjogren's mortality statistics
Post by: Scottietottie on July 28, 2012, 05:33:48 PM
Hi iraisin

Have you used a search engine to look for Constrictive Obliterative Bronchialitis? I just have and the first few articles I came upon didn't mention Sjogren's.

Please don't think I am doubting what you are saying. Sjogren's may well be the cause of your friend's condition but as far as I can read, it is not a condition specific to Sjogren's.

Take care - Scottie
Title: Re: Sjogren's mortality statistics
Post by: mshistory on July 28, 2012, 05:41:11 PM
Hi iraisin

Have you used a search engine to look for Constrictive Obliterative Bronchialitis? I just have and the first few articles I came upon didn't mention Sjogren's.

Please don't think I am doubting what you are saying. Sjogren's may well be the cause of your friend's condition but as far as I can read, it is not a condition specific to Sjogren's.

Take care - Scottie

Scottie, I'm pretty sure she's referring to sass - one of our board members whose pathology reports indicate her lung disease is consistent with Sjogren's.
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 28, 2012, 06:04:48 PM
Thanks for proving my point.
Title: Re: Sjogren's mortality statistics
Post by: Linda196 on July 28, 2012, 07:40:44 PM
COB is a fairly well researched disease, although not common. In my 34 years in critical care nursing I was only personally involved in the care of three cases.

One of those cases was indeed secondary to autoimmune disease, the patient had histopositive, well documented sarcoidosis.

The second case was in a 16 year old patient who had a reaction to inhaled nitrous oxide, with no history of any illness, either acute or chronic.

The third was apparently the result of an acute bacterial bronchiolitis, and took several months of investigation to differentiate from Bronchiolitis obliterans organizing pneumonia.

There is documentation of a relationship with collagen vascular diseases, including RA and Lupus. The only pathological indicator I can think of that would lead a pathologist to indicate a specific disease process as being responsible is the presence of the white blood cell most commonly affected by that disease, like eosiniphils in Eosinophilic fasciitis, or granulomas in Sarcoidosis. In the case of sjogrens and lupus, the same white cell, the lymphocyte, would be the identifier.
Title: Re: Sjogren's mortality statistics
Post by: Gayle on July 29, 2012, 04:27:44 AM
Hi Iraisin,

I love the letter you sent AND I think the letter you got back is very revealing if somewhat disappointing. BUT, I think it speaks mountains of where you/I/we go from here.

IF the doctors don't know... then go to the source of the diagnostic choices for the death certificates. The ME's...

Maybe this is where we need to start... there are controlling boards that maybe your letter should be addressed to.

Geesh, I hope this is making sense, I have been up half the night and only one sip of coffee... Thoughts?



Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 29, 2012, 04:55:16 AM
I think you're right, Gayle. I sent a letter out to NAME - hoping to get a response back. I am marching on and will continue to be the thorn in the sides of many. It's worth it if it effects change for more research and awareness.

There's so many people out there that have this and are getting sick and don't even know it. Then there's those that are being disregarded and know they are sick and dealing with both. And then there's those, who are sick and being disregarded because their tests are negative. Then the meds and the mixture of all we have to take for varying ailments - that alone makes us sick, much less the sjogren's.

The current system is obviously very screwed up to me.
Title: Re: Sjogren's mortality statistics
Post by: sass on July 29, 2012, 08:45:46 AM
In my neck of the woods, an ME rarely sees a body.  It is our courner, justice of peace, judge or constable that goes to a death sight.  Unless, the family is willing to pay up to $2000 for an autopsy or the death is of suspicious nature an ME  is not involved. 

I know 3, a constable that is also owner of a funeral home and a JP/Judge and a former JP.

I will try in the next few days to contact them and see what their recommendations or insight would be. 

Also, when my BIL passed away, he had a rare heart condition that is passed to every male in his family,  None have lived past the age of 40.  My SIL had an autopsy done on him, to help in any way for her two sons future.  I spoke to the ME myself when the report came in, but I will ask my SIL what is listed as his cause of death.
~sass~
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 29, 2012, 09:52:48 AM
Thank you, Sass.

I am sorry for your loss, truly. I hope all of this doesn't stir up sadness for you.

Your efforts are heroic and noted and appreciated.

Thank you.
Title: Re: Sjogren's mortality statistics
Post by: quietdynamics on July 29, 2012, 10:18:04 AM
iraisin...Here is some info on the National Institute of Health. Hopefully, they could direct you to some concrete data.

NIH is made up of 27 Institutes and Centers, each with a specific research agenda, often focusing on particular diseases or body systems. NIH leadership plays an active role in shaping the agency's research planning, activities, and outlook.
http://www.nih.gov/about/

Chronic Diseases
http://www.nih.gov/about/discovery/chronicdiseases/index.htm

***Learn about the many ways that NIH encourages public participation and feedback.
http://copr.nih.gov/getinvolved
 

Title: Re: Sjogren's mortality statistics
Post by: sass on July 29, 2012, 10:22:19 AM
Thank You...we lost an exceptional man that was a true gentle giant.  Both grown sons are in their 20's now and one has had a pacemaker put in already.  My BIL died at age 39, his brother 33, his father 31.  We hold are breath constantly with the fate of my two precious nephews. We do not dwell on it, but it is always there. 

On a different note....this site is full of soo much information that it boggles my mind.  When the page opens, type in the word Sjogren's.....I never reached the end.  I also typed in the word Constrictive obliterative bronchiolitis in association with Sjogren's and got hits on it as  Constrictive Bronchiollits and other...As an Note here...do not confuse it with BOOP, that has simular references.  Most articles are free and can be PDF,,,the one article i was very interested in unfortunetly has a fee associated and I could not read.   Tons of studies being done here!!!!

http://rheumatology.oxfordjournals.org/search?fulltext=Sjogren%27s&submit=yes&x=16&y=9
Title: Re: Sjogren's mortality statistics
Post by: quietdynamics on July 29, 2012, 07:17:24 PM
iraisin...here is info from Arthritis Today: Sj?gren?s Syndrome: Treatments on the Horizon

*Please note 2nd section.
-The ACR  annual meeting noted was only in 2010; regarding Dx criteria for SJS. This brings us back to the reality that prior to 2010 national criteria was not established, and as such, many cases would not have been Dx'd. Thus, following the cause of death back to "an original Dx of SJS" highly improbably, many cases missed; any data invalid.  We are now on the same page with European protocol and can share in the world databank.

-We do not know what proportion of deaths from other AI were overlap? and attributed to say Lupus? http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5117a3.htm   Ex: I was originally Dx'd... SJS/Lupus. If I had died in 89' would it have been of complications from Lupus? *Interestingly, the Lupus site states 10-15% premature deaths/ not mortality.

- I believe even a cursory scan of studies and research being done in SJS, above and beyond "Sicca", the establishment of dedicated research centers/clinics in this areas attest to the significance of this disease and potential to destroy the human body.

-I hope we can provide more up to date information on this site such as provided by Mshistory (that is being handed to my Drs!!! Really well done.) and information resources to Drs. AND Specialist so they are no longer caught up in "Sicca" and then stop there...I believe we become "depressed over medical care"... I did!!!

Arthritis Today
In addition, a group of Swedish researchers presented findings from a study at the American College of Rheumatology?s (ACR) November 2010 annual meeting showing that people with Sj?gren?s syndrome had skewed B cell maturation after receiving the H1N1 flu vaccine, resulting in higher amounts of vaccine-specific antibodies that may be related to inflammation. While the patients developed immunity against the flu, the study may reveal some links between B cells and autoimmune problems in Sj?gren?s syndrome.

Genetic cues: A group of researchers at the National Institutes of Health in Bethesda, MD, reported on their study focusing on better ways to diagnose Sj?gren?s, including identifying microRNAs, or genes, that may be related to the disease. The researchers used biopsies, or tissue sample studies, from salivary glands. The study showed promising results in identifying a genetic biomarker for the disease, aiding its proper diagnosis so treatment can begin promptly.

Gene therapy: Gene therapy is one of the most exciting areas of disease research, where targeted molecules are inserted into patients? genetic tissue in an effort to correct malfunctions that cause disease. At the ACR 2010 meeting, a group of Dutch researchers reported the findings of their gene therapy study targeting B cells in mice. The researchers used B cell-targeting gene therapy to treat the salivary glands of mice, and found that they were able to reduce autoimmune-related inflammation. They believed their findings suggested that such gene therapy would aid people with Sj?gren?s syndrome.

Another study conducted at the University of Florida investigated delivering Small Interfering RNA genetic material, or siRNA, into cells in the lab, a process that showed promising results in preventing inflammatory reactions. The researchers stressed that this therapeutic strategy could be easily manipulated to target different genes, and could have potential as a Sj?gren?s treatment.

Artificial salivary glands: Researchers are trying to develop artificial or regenerated salivary glands to help people with Sj?gren?s syndrome relieve dry mouth symptoms. Scientists are experimenting with tissue engineering, gene therapy-like techniques, and stem-cell methods to help malfunctioning salivary glands start producing the half-liter of saliva needed daily to prevent oral disease.
Title: Re: Sjogren's mortality statistics
Post by: iraisin on July 29, 2012, 08:13:37 PM
Thank you, Quiet

I read the paper at the link you posted and had some thoughts. I wonder if perhaps I need to also include the CDC in my communications.

I also learned, that the families have a lot to do with what is written on the death certificate.

LOTS of good information in all of what you offered. I appreciate.

WheW! I've got a list of stuff! You guys are phenomenal!
Title: Re: Sjogren's mortality statistics
Post by: sass on July 30, 2012, 06:46:33 AM
Wow, what a wealth of information you are getting from so many people..Congrats everyone out there..I can tell that people have been doing their homework and studies and research for a long time..there is like a hunger from all of us to find out more than just dryness, aches, and pains.   We are being productive and assertive in what is going on with our bodies and this disease.  Now that we know more things are associated with Sjogren's the more we are wanting to be aware.   And I gotta say everyone is stepping up to the plate ..Kuddos!!

I think we want changes, as much as the much needed advice.  There are so many people here with experience, education, medical skills, talents that are abundant..And I am glad to see that they are not going to waste.  Blessings to all of you!  I am profoundly impacted!

and please if you have any information, insights, don't hide your light under a bushel....let some one know...if you have had an unusual medical twist, like me that sjogrens is associated with..tell us your story...make us aware......~sass~
Title: Re: Sjogren's mortality statistics
Post by: slccom on July 30, 2012, 02:26:05 PM
Most articles are free and can be PDF,,,the one article i was very interested in unfortunetly has a fee associated and I could not read.   Tons of studies being done here!!!!

http://rheumatology.oxfordjournals.org/search?fulltext=Sjogren%27s&submit=yes&x=16&y=9

Sass, contact your public library and see if you can get it through them. You might be able to call and ask them to print it out and mail it to you, or e-mail it to you.

Or contact the medical library in Houston, or your doctor, and ask them for it.

There is always a way....
Evil grin, Sharon
Title: Re: Sjogren's mortality statistics
Post by: sass on August 04, 2012, 01:40:15 PM
Sharon, thanks for the heads up, I am going to look into it...

I raisin, how goes the statistics challenge?   Let me know if you need some research done...my legs are too worn out to do any leg work!   sass


Title: Re: Sjogren's mortality statistics
Post by: Nancy60 on August 04, 2012, 02:21:04 PM
I am able to get access to some articles if you let me know which ones you want I might be able to email them to you, not sure but I can try.

Nancy
Title: Re: Sjogren's mortality statistics
Post by: gold55 on August 04, 2012, 03:17:11 PM
Couldn't they put as the reason for death:  Sjogrens-related complications?
When my mother-in-law just passed they put end stage renal failure but they might as well have put "Diabetes" because that's what caused her to have the kidney problems.   I guess they list the "specific cause of death" rather than the underlying disease that really caused it. 
Title: Re: Sjogren's mortality statistics
Post by: sass on August 04, 2012, 03:45:14 PM
Gold, you are so right..
With crime, you will see GSW..gun shot wound,, or blunt force trauma on some death certificates, not blood loss....or severed artery.....The GSW caused the blood loss and the cause of death is GSW. Or it is impossible to make a case in court if all the prosecutors had to stand on was blood loss. 
It should be the same for an illness.  How can a scientist or anyone ask for funding for research with no proof on death certificates that they can present to the government,insurance, pharmaceutical companies that we have a need to be researched..  How, other than your voice, will anyone know that your MIL even had diabetes, must less, that she died from it..And look at the research done there and it is ashamed a true shame that her death certificate names the same end of life cause that many criminals certificates will show.   Does that not show disrespect to her and her battle as well as millions of others and the teams fighting so valiantly against diabetes?.
Title: Re: Sjogren's mortality statistics
Post by: sass on August 04, 2012, 04:13:45 PM
Nancy60, I will try to find the article again and PM you the info.. Thanks a million....~sass~
Title: Re: Sjogren's mortality statistics
Post by: jazzlover on August 04, 2012, 05:04:47 PM


Arthritis Today
In addition, a group of Swedish researchers presented findings from a study at the American College of Rheumatology?s (ACR) November 2010 annual meeting showing that people with Sj?gren?s syndrome had skewed B cell maturation after receiving the H1N1 flu vaccine, resulting in higher amounts of vaccine-specific antibodies that may be related to inflammation. While the patients developed immunity against the flu, the study may reveal some links between B cells and autoimmune problems in Sj?gren?s syndrome.


Title: Re: Sjogren's mortality statistics
Post by: jazzlover on August 04, 2012, 05:06:15 PM

Arthritis Today
In addition, a group of Swedish researchers presented findings from a study at the American College of Rheumatology?s (ACR) November 2010 annual meeting showing that people with Sj?gren?s syndrome had skewed B cell maturation after receiving the H1N1 flu vaccine, resulting in higher amounts of vaccine-specific antibodies that may be related to inflammation. While the patients developed immunity against the flu, the study may reveal some links between B cells and autoimmune problems in Sj?gren?s syndrome.



Are you saying that the vaccine gave someone an auto-immune condition?? I would believe that!!
Title: Re: Sjogren's mortality statistics
Post by: jazzlover on August 04, 2012, 05:08:55 PM

I also learned, that the families have a lot to do with what is written on the death certificate.



I know the doctors do. You may be able to ask your doctor to write "Sjogren's" on the certificate. My dad died of Parkinson's (doesn't usually cause death by itself... my dad died of sepsis) His certificate says "Parkinson's."
Title: Re: Sjogren's mortality statistics
Post by: Belsey1 on August 04, 2012, 09:06:16 PM
My husband has had COPD, emphysema, and asthma for close to 20 years...completely disabled for 15 of those.  My grandfather was diagnosed with the same and lived over 30 years.....farming, hunting, fishing.  One never knows. 

I would love to know and would help in any way if someone finds the right avenue to effect a change in the way this DISEASE* is labeled/viewed.

* I no longer say syndrome when telling people about Sjogrens.  I call it Sjogren's Disease.
Title: Re: Sjogren's mortality statistics
Post by: irish on August 04, 2012, 10:29:33 PM
The thing with putting a cause of death on a certificate is that there isn't enough room these days.

Years ago when people died the cause of death was "pneumonia" or "grippe", etc. Very short and simple. Now days with all the medical info and jargon that is available there is no way that there is room for all that info.

If a person dies of CAD or coronary artery disease that is what is put on the certificate. In reality there could be a long list of complications that are attributed to the CAD. You can have heart attacks, blood clots, kidney failure, etc the list goes on.

As a nurse I guess I don't see a big issue with the specifics. If a person feels that their loved one died of something caused by sjogrens I guess I would tell the doc to put it on the certificate to keep the records in order.

I know that we have had several people die of lupus and other problems or complications in the last year and the lupus and the complication are usually mentioned in the obituary. I am juessing that there are no set rules on what is needed. I think speaking with the doctor or who every fills out the certificate is the way to go.

When my mother in law died (a sort of strange circumstance) I asked the doctor what he was going to put as the cause of death and he told me. I think I could have had input if it was needed. Just some thoughts. Also, sometimes even with an autopsy it can be hard to distinguish what a death is from. I watch the medical examiner shows and after they have exhausted all the autopsy results and blood work it seems sometimes that they come down to things that sound like the "best bet" scenario. I would bet that sometimes they truly are fishing. Irish
Title: Re: Sjogren's mortality statistics
Post by: Cricket on August 04, 2012, 10:40:21 PM
I agree with Irish.

When my uncle died he had cancer, but because his heart stopped they were going to put down heart.  My aunt talked to the doctor and he also put down cancer.  Around where I live it is usually the doctor who makes the call on cause of death.

Unless nobody has any idea then the medical examiner puts it down if there is an autopsy.

I think it is probally the same in the states and the dr treating them decides what to put down.  Could be wrong ~ but don't think so.[aren't I smart a** tonight lol!!!] ~Cricket~
Title: Re: Sjogren's mortality statistics
Post by: susanep on August 05, 2012, 12:32:42 AM
Have any of you found what is the mortality rate for lupus?

susanep :)
Title: Re: Sjogren's mortality statistics
Post by: gold55 on August 05, 2012, 02:08:19 PM
That is very strange about the H1N1......I wasn't going to get that shot but I caved in!  That was in 2010-2011 and I was diagnosed with possible SJS in 2012.  Could it be that shot "woke up" my existing SJS??  or my SJS gene????  My workplace says it's impossible to get anything from the flu shots because they are "not live".......our immune systems are out of balance and anything injected into our bodies will start an immune reaction.  Dang, I wish I would have never gotten the flu shots!!!
Title: Re: Sjogren's mortality statistics
Post by: Nancy60 on August 05, 2012, 03:04:06 PM
You are right Cricket,

Here in the US the attending doctor/or family doctor if death occurs at home and is not suspicious, will put down cause of death on the death certificate.  They usually put down the most immediate problem even if there are multiple medical issues (ie pneumonia even if an elderly person had a hip fracture and COPD but developed pneumonia from being bed ridden).  If death was under suspicious circumstances, an autopsy will be done but again they will put down the most likely "cause" of death, not all the other medical conditions that exist.

Just like with us, we might have several "diagnoses" but 1 or 2 might be the primary cause of our issues.

Nancy
Title: Re: Sjogren's mortality statistics
Post by: sass on August 05, 2012, 03:46:41 PM
Ironically enough, I had a Pertussis, (Whooping cough) shot a few months before having becoming ill with this lung disease.  I went in with my daughter routinely for her pregnancy check up and it was offered to me for $40.00.  Told it would help prevent any chance of the newborn getting it..Well, I of course said yes...had two more little newborns already born..and with this one on the way...I shelled out my 40 bucks and rolled up my sleeve, quite healthy and willing.

I read now, it should not be given to someone with autoimmune....no one ask me....so, hmmm... just makes me wonder..This is something I will ask next appointment!  ~sass~
Title: Re: Sjogren's mortality statistics
Post by: Reanne on August 05, 2012, 04:22:02 PM
I got sick after the hep b shots.  I can't really pinpoint how much time afterwards.  I saw one of the side effects was lupus like syndrome, but thought it was supposed to go away after awhile.  :(
Title: Re: Sjogren's mortality statistics
Post by: gold55 on August 05, 2012, 09:21:23 PM
No wonder my husband refuses anything shot into his body or treatment of any kind and he's healthy at age 59!!  He won't even take a vitamin!