Sjogren's mortality statistics

[Scottietottie]

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

[sass]

 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~

[irish]

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

[eyeamdry]

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

[sass]

Yes, Lucy I must agree.  Cancer is horrible, mean and and unfair. I am sorry that you have had  to struggle with both.  sass

[KarenR]

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.

[harrigan]

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

[sass]

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. 

[iraisin]

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.

[sass]

iraisin, Very well said...Bravo! 

[mshistory]

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

[sass]

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~

[iraisin]

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.

[Gayle]

MS - Great Article, thanks for sharing!!

Iraisin! You go woman! Let me know what, if anything I can do! I agree completely!

[Diane63]

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