Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: shortstuff on September 10, 2010, 06:16:53 PM

Title: Why can't the smart scientists....
Post by: shortstuff on September 10, 2010, 06:16:53 PM
Why can't they get stem cells from the salivary glands and tear ducts of healthy people without Sjogren's and engineer them to be resistant to the lymphocytes in our bodies that are attacking them and transplant them to us? I'm not a biologist so I'm sure there are a zillion things wrong with this idea but my God, wouldn't that be fabulous?!

I've been thinking about the mechanics of Sjogren's and wishing there was something that no one's thought of that would fix it. I'm bummed because if it's genetic we can't change that.  And how could we even change that for future generations?  We're made how we're made. UGH. It's not enough to mask the symptoms, it has to be stopped.
Title: Re: Why can't the smart scientists....
Post by: ohiolady on September 10, 2010, 07:16:03 PM
I, too, wonder why they can't do more.  They can do open heart surgery and many, many medical marvels so why can't they figure out some of this autoimmune stuff.  Maybe someday.

Anna
Title: Re: Why can't the smart scientists....
Post by: SLEEPY101 on September 10, 2010, 08:01:57 PM
Do you have a Facebook acct?

Check out Dr Faustman's Lab. Her lab is currently researching taking stem cells from a patients spleen to help Diabetes,Sjogrens and other Autoimmune disease

If you dont have FB, goolge Fautman lab I am sure she has a website
Title: Re: Why can't the smart scientists....
Post by: Joe S. on September 10, 2010, 11:51:03 PM
I do not know if the stem cell will work. It will be decades before it is released for people.

The money tends to flow to what Big Pharmco's profit models suggest and the small researcher's working on options like "L-form bacteria" usually have to fund their research out of their pocket or from college grants.
Title: Re: Why can't the smart scientists....
Post by: Lesleybird on September 11, 2010, 02:56:31 AM
  I think more like they need to find a way for us to make antibodies to our ssa and ssb antibodies so they cannot be there to attack healthy cell components. We need them to create a vaccine against these antibodies.  Lesley
Title: Re: Why can't the smart scientists....
Post by: LizPetillo on September 11, 2010, 03:42:52 AM
I hope the scientists are smarter than the doctors I've encountered in the past 5 months ...
Title: Re: Why can't the smart scientists....
Post by: Carolina on September 11, 2010, 04:49:50 AM
Lol, reading the posts, as I do, and hit Liz' comment:

Quote from: LizPetillo on September 11, 2010, 03:42:52 AM
I hope the scientists are smarter than the doctors I've encountered in the past 5 months ...

The "scientists" who do this research are NOT at drug companies.   They are at universities, and they do the 'pure' 'basic' research that looks at these sorts of questions related to immune system diseases.

They are WAY smarter than any doctors you'll ever meet. 

They consider doctors to be 'technicians' with little to no imagination or desire to understand how things REALLY work.

Research Scientists make almost no money and work long, long hours.  My husband used to go into work at 2 AM to check on the status of his research animals post transplantation (he worked on the immune response to organ transplants).   HE was the ICU for his research animals.

He did some of the very basic works underlying current stem cell transplant therapy, for example.  All related to the immune system.

Way smarter than doctors, way poorer.  But they embrace the trade off!    Because they are endlessly curious about what makes things happen and how we might intervene to make things better.

PS:  My husband HAD to get research grants EVERY year to keep his job.  He had to bring in 30-50% of his salary and support the research operations AND the overhead for the university.  Writing grants is almost a full time job in itself.  These are the people who win the Nobel prizes in chemistry, biology and medicine.  Not doctors of medicine.

Some amazing doctors of medicine, of course, do both.   They are the super heroes of the medical world.

Often, however, the 'research' an MD is participating in is the clinical trial of a drug..................many stages down the road from the original research.

It's a complicated and fascinating world!

Now if it can just get answers to OUR questions, life would be perfect.  (Like, where DOES that sock go in the dryer?).

Kisses

Elaine
Title: Re: Why can't the smart scientists....
Post by: shortstuff on September 11, 2010, 06:43:29 AM
Sleepy101, thank you! I will definitely check this out.

I like the antibody to the antibodies idea but again I haven't taken bio since high school so I don't even know what suggestions are reasonable and what is ridiculous.

I know, funding is the issue.  I am a stay at home mom with an MBA and I need something to do with myself.  Now I'm wondering if working on getting funds for research should be it. What can we do?  With all illnesses and diseases it's the squeaky wheels....there's a huge push to raise money for breast cancer and all kinds of other stuff.  Only we can create awareness and push.  I've been reading a book on the polio vaccine and it's fascinating how it came about.....FDR pushed for the creation of the foundation from which the March of Dimes was formed.  Semi manipulative marketing tactics were used to bring polio to the forefront of peoples' minds, convincing parents the risk of their children getting polio was high.  In actuality it was nowhere are likely as it was made out to be.  The government supported research to create the vaccine and Salk and Sabin worked tirelessly with the goal of eradicating the virus.  Basil O'Connor (who ran the foundation) had a daughter die from polio and he made it his life's work to make sure money was available to research for a vaccine.

I believe I read Sjogren's is even more common than lupus.  It takes a big PUSH to get people on board, raise money and encourage further research.  Sorry to be so annoying.  If I had the time, money and ENERGY I wish I could just go back to school and work on this stuff.
Title: Re: Why can't the smart scientists....
Post by: Scottietottie on September 11, 2010, 06:56:42 AM
Hi  :)

Personal view is that stem cell technology or gene manipulation is probably tghe best bet for AI sufferers.

problem will always be money for research and reasonably 'rare' conditions are always going to be at the bottom of the heap as far as getting funding goes.

Hopefully in the future something will be able to be done but I'm not counting on it in my lifetime.

Take care - Scottie  :)
Title: Re: Why can't the smart scientists....
Post by: inga on September 11, 2010, 07:15:46 AM
Other than tried and true vaccines....don't count me in on the list....and I administered vaccines...We have the Lyme vaccine, Lymrix debacle.

Then this

http://www.docguide.com/news/content.nsf/news/852576140048867A85257653006A94DD

http://jenjensfamily.blogspot.com/
Title: Re: Why can't the smart scientists....
Post by: cmclien on September 11, 2010, 07:19:10 AM
I found this article on this web site that has a good section on sjogren's.  http://www.agingeye.net/dryeyes/sjogren.php  Here is some brief info on current research.

What Research Is Being Done on Sj?gren's Syndrome?

"Through basic research on the immune system, autoimmunity, genetics, and connective tissue diseases, researchers continue to learn more about Sj?gren's syndrome. As they get a better understanding of the genes involved and which environmental factors trigger disease and how, they'll be able to develop more effective treatments. For example, gene therapy studies suggest that we may someday be able to insert molecules into salivary glands that will control inflammation and prevent their destruction. Other research focuses on how the immune and hormonal systems work in people who have Sj?gren's and on the natural history of the disease (learning how it affects people by following those who have it).

Researchers are also looking into the use of the salivary stimulant pilocarpine for dry eyes. Other researchers are testing immune modulating drugs to treat the glandular inflammation. A drug called cevimeline has recently been approved for treating dry mouth. Work on developing an artificial salivary gland is in progress.

The National Institute of Dental and Craniofacial Research is conducting several studies on Sj?gren's syndrome designed to help scientists better understand, manage, and treat the disease. Some focus on the disease's natural history, while others test potential new treatments. Talk to your doctor if you'd like more information about these clinical trials."
Cindi

Title: Re: Why can't the smart scientists....
Post by: Epson on September 11, 2010, 12:45:01 PM
Did you guys forget that the last president put the brakes on stem cell research in the U.S?  Other countries are probably way ahead of us in this area, hopefully we can catch up.  I know a researcher that moved to France so he could continue his work unimpeded in this field.
Title: Re: Why can't the smart scientists....
Post by: Scottietottie on September 11, 2010, 03:34:09 PM
I knew that - it made it to the main news over here.
Title: Re: Why can't the smart scientists....
Post by: navydad on September 12, 2010, 05:18:38 AM
Its easier for the drug companies to just make another pill,,

And I dont kow how many times I have seen on the news,, (we have a breakthugh in the fight against ***********),, but it never seems to make it to the next level,, drug companies own doctors, its easier for doctors to just write a scrip for something then it is for them to find out what is going on,,, now some of you tout your doctors as saints,, and I;m glad for you, but some of us continually run into idiots in white coats who know the shoulder shrug al to well,,

Bush did put the brakes on stem cell research,, not all of it,, but a lot of it,,, but what has Obama done about it except pass a health care bill that will brak the bank , I agree everyone needs some basic health coverage,,but if it would have passed during the Clinton years,, the mess its going to create might have been straightened out by now,, regardless,, nothing is going to change except what the insurance companys dictate,,
Title: Re: Why can't the smart scientists....
Post by: gphx on September 12, 2010, 07:19:10 AM
I'm one of those vaccination kooks for sure. The only real way they have to test them on humans is to put them out there and see how many people come down with AI diseases and/or die.

Early in my life I was given the 1976 swine flu vaccine.

It became obvious so quickly so many people were getting sick from it they withdrew it in a few weeks. An unusual number of people got Guillain-Barre' and other AI diseases from that vaccine and not one person died of swine flu. My whole family got the vaccine. Half of them are already diagnosed with AI conditions and the other half are highly probable.

There's probably no way I'll ever know if that vaccine was responsible for our current problems but I don't ever intend to get another vaccine unless it's for something that's already killing me.
Title: Re: Why can't the smart scientists....
Post by: Epson on September 12, 2010, 07:57:13 AM
Navydad,

I guess you haven't read the paper lately, on Thursday, a federal appeals court held that federal funding for embryonic stem cell research could continue.

The ruling comes nearly two weeks after Federal Judge Royce C. Lamberth blocked President Obama's 2009 executive order expanding stem cell research, citing a 1998 statute banning the use of federal funding for the destruction of embryos. Following that August injunction, scientists scrambled to asses whether they could keep research projects going without the expected government funds.

Good news for anyone looking for a cure.