Author Topic: A cure. Please read  (Read 4687 times)

ttdub

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Re: A cure. Please read
« Reply #15 on: May 15, 2011, 08:32:38 AM »
I agree with you Joe, I just believe people need hope (even if it turns out not to work).

How did your friend die? Was the "cure" or his sjogrens being untreated. And I'm very sorry for your loss.

Joe S.

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Re: A cure. Please read
« Reply #16 on: May 15, 2011, 08:57:56 AM »
The cure was for lupus. She died from complications for lupus. I watched her go down hill every day from the start of her "new" drug.
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ttdub

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Re: A cure. Please read
« Reply #17 on: May 15, 2011, 03:45:46 PM »
I'm really sorry! That's horrible!

irish

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Re: A cure. Please read
« Reply #18 on: May 15, 2011, 03:50:15 PM »
All encompassing is another way of saying that this disease affects so many parts of the body. Years ago it was just the dry eyes and mouth and over the years more and more people are coming out with all these issues that no one paid any attention to at first.

Right now one of my friends from town who has sjogrens is in a research group from Mayo Clinic. She has been so ill. In the hospital at least 4 times in the past 15 months or so and came close to dying several times. The last time was really, really bad with intubation, etc. The were told if she had come 10 minutes later to ER she would have died. She spent 10 days in ICU and then went to nursing home for a few weeks. She would get pneumonia as fast as you could snap your fingers. She has COPD and diabetes also.

This last time she got a doc at Rochester who really paid attention and took an interest in her case. He has changed her whole treatment plan and the last time she was there for her check up she was outfitted with a bracelet on her ankle to measure her steps and something on her arm to measure all her vitals, etc.

This doc is of the opinion that she is having severe lung damage from the sjogrens. That is something that I have been thinking all this time but no one would take her seriously. Sooo, we just hang on and wait until something comes up that will help us.

I am an old timer and have to tell you that my generation has seen a lot of illness that was incurable until just a few years ago. The younger generation of people in this country are used to "instant everything" as that is the way they were raised---this includes my kids also. The bottom line is that we always have to wait for them to find a cure for a disease. When I was a kid people were dying from polio and I had to stay inside a lot in the summer so I didn't get a bug bite.

People also died from bacterial meningitis, measles, chicken pox and on and on. In those days we were more adaptable to the hardness of life. I am not saying this to insult anyone, it is just the way it is. Just imagine living back in the 1700's when everything that one got had the potential to kill a person. It is a wonder that the earth was able to populate enough to keep up as so many babies died.

So, the qwest for knowledge goes on and we must be patient and wait. Hard to do, but there is not a fast track to research in most countries. Also, a lot of things learned from research is just plain luck!!! Someone discovers the cure for a disease while trying to figure out another scientific problem. Irish ;D

DragonflyC

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Re: A cure. Please read
« Reply #19 on: May 15, 2011, 03:52:58 PM »
Ttdub,

I've been following Dr. Faustman's work at Mass General carefully, and it's very promising!  

When I went to the Sjogren's Syndrome Foundation seminar, the doctors there were talking about other researchers looking into similar ideas about BLyS. Here's a related article by researchers from The Garvan Institute of Medical Research http://www.ncbi.nlm.nih.gov/pubmed/11781351

I think that the involvement of several major hospitals and research facilities will ensure that this research is done appropriately.

--C.
« Last Edit: May 15, 2011, 05:11:41 PM by DragonflyC »

Dry1000

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Re: A cure. Please read
« Reply #20 on: May 15, 2011, 06:26:25 PM »
Hey everyone

          I am very excited about this news, I have been aware of Dr. Faustmans work dealing with Sjogrens for years, I donate $20 every month to her site www.faustmanlab.org, I'm young(31) and optimistic. The plaquinel has done wonders for me but I am still not like I was before sjogrens. I hope this leads to cure or better treatment options for all of us who deal with this terrible disease on a daily basis.

Budgie

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Re: A cure. Please read
« Reply #21 on: May 16, 2011, 02:58:41 AM »
It's interesting research and another brick in the wall of knowledge that is steadily if slowly being built around Sjogren's and related autoimmune disorders such as type 1 diabetes.

I too posted about this latest breakthrough a few weeks ago under the subject 'Link between Diabetes and Sjogren's'.

jjj3

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Re: A cure. Please read
« Reply #22 on: May 16, 2011, 10:05:49 AM »
The Faustman Lab completed the Phase I trial for BCG in diabetes and they are currently raising money to start Phase II.  I posted a question on their facebook page asking if BCG is successful in T1 diabetes, how can that help those of us with SJS?  I received a response that they are hoping that it would be picked up by another company or organization to move it forward toward use in SJS.  I'm short on time and can't find the exact response right now, but I'll try to find it later.  I would recommend everyone with SJS follow the Faustman Lab on facebook, as this seems to be the best hope we have at this time.

DragonflyC

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Re: A cure. Please read
« Reply #23 on: May 16, 2011, 11:11:00 AM »
For people who don't use facebook, you can keep up with Dr. Faustman's research at her web site: http://www.faustmanlab.org/

You can also sign up on her website for email alerts, which I would imagine contain pretty much the same information posted on the facebook page.

Finally, if you google her, you'll see lots of references in journals, on the Mass General web site, etc. While there's no guarantee that her research will turn out as we hope, she's a credible source doing valid, laboratory-based research.