Author Topic: Sjogren's mortality statistics  (Read 24555 times)

iraisin

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Re: Sjogren's mortality statistics
« Reply #45 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!

sass

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Re: Sjogren's mortality statistics
« Reply #46 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~

slccom

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Re: Sjogren's mortality statistics
« Reply #47 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

sass

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Re: Sjogren's mortality statistics
« Reply #48 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



Nancy60

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Re: Sjogren's mortality statistics
« Reply #49 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

gold55

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Re: Sjogren's mortality statistics
« Reply #50 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. 
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

sass

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Re: Sjogren's mortality statistics
« Reply #51 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?.

sass

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Re: Sjogren's mortality statistics
« Reply #52 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~

jazzlover

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Re: Sjogren's mortality statistics
« Reply #53 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.


Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

jazzlover

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Re: Sjogren's mortality statistics
« Reply #54 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!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

jazzlover

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Re: Sjogren's mortality statistics
« Reply #55 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."
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Belsey1

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Re: Sjogren's mortality statistics
« Reply #56 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.

irish

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Re: Sjogren's mortality statistics
« Reply #57 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

Cricket

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Re: Sjogren's mortality statistics
« Reply #58 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~
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susanep

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Re: Sjogren's mortality statistics
« Reply #59 on: August 05, 2012, 12:32:42 AM »
Have any of you found what is the mortality rate for lupus?

susanep :)
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