Author Topic: Sjogren's mortality statistics  (Read 24471 times)

Suslew

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Re: Sjogren's mortality statistics
« Reply #30 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.

sass

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Re: Sjogren's mortality statistics
« Reply #31 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~
« Last Edit: July 28, 2012, 07:22:07 PM by sass »

sass

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Re: Sjogren's mortality statistics
« Reply #32 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~

iraisin

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Re: Sjogren's mortality statistics
« Reply #33 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

Scottietottie

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Re: Sjogren's mortality statistics
« Reply #34 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
http://sjogrensworld.org/   (our home page)
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https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


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mshistory

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Re: Sjogren's mortality statistics
« Reply #35 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.
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

iraisin

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Re: Sjogren's mortality statistics
« Reply #36 on: July 28, 2012, 06:04:48 PM »
Thanks for proving my point.

Linda196

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Re: Sjogren's mortality statistics
« Reply #37 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.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Gayle

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Re: Sjogren's mortality statistics
« Reply #38 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?




iraisin

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Re: Sjogren's mortality statistics
« Reply #39 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.

sass

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Re: Sjogren's mortality statistics
« Reply #40 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~

iraisin

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Re: Sjogren's mortality statistics
« Reply #41 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.

quietdynamics

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Re: Sjogren's mortality statistics
« Reply #42 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
 

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

sass

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Re: Sjogren's mortality statistics
« Reply #43 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

quietdynamics

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Re: Sjogren's mortality statistics
« Reply #44 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.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"