My Mom

starfire · Post by **starfire** » Sat Jul 02, 2005 7:10 pm

I found out today that my Mom has Ankylosing Spondylitis.

Doing some research on that I found the following re. causes on the Spondylitis Association of America website. The last line makes me very nervous. My Mom has suffered from this for a long time but it took a Rheumatologist to diagnose her.
The website address is http://www.spondylitis.org/main.aspx

Causes of Ankylosing Spondylitis
Although the exact cause of AS is unknown, we do know that genetics play a key role in AS. Most individuals who have AS also have a gene that produces a "genetic marker" - in this case, a protein - called HLA-B27. This marker is found in over 95% of people with AS. It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis. HLA-B27 is found in about 7% of the unaffected population.

Scientists know that other genes, along with a triggering environmental factor, such as a bacterial infection, are needed to trigger AS in susceptible people. HLA-B27 probably accounts for about 40% of the overall risk, but then there are other genes working in concert with B27. There are probably five or six genes involved in susceptibility toward AS. It is thought that perhaps AS starts when the defenses of the intestines start breaking down and bacteria from the intestines pass into the bloodstream directly into the region where the sacroiliac joints are located.

Love, Shirley

Polly · Post by **Polly** » Sat Jul 02, 2005 7:32 pm

Shirley,

Sorry to hear about your mom's diagnosis. I hope she will do well.

That last line sounds suspiciously like the issue Dr. Fasano discussed with zonulin, doesn't it? (I wrote an article about his research - it is in the Reasearch Forum). When I meet with him later in the summer I will ask if he knows if AS is one of the diseases with high zonulin levels, like rheumatoid arthritis, multiple scerlosis, Diabetes type I and celiac disease.

Love,

Polly

starfire · Post by **starfire** » Sat Jul 02, 2005 7:37 pm

Thanks Polly. I guess I'm worried that I may be predisposed to have the disease also. Seems like the only treatment for it is NSAID's. Joy, Joy!!

Love, Shirley

Post by **tex** » Sat Jul 02, 2005 9:09 pm

If Leaky Gut Syndrome is the mechanism responsible for triggering AS, I would suspect that we might all be at risk of developing it.

Hopefully, when Dr. Fasano perfects a "pill", it will take care of the entire family of related diseases that are triggered this way.

Love,
Wayne

Momster · Post by **Momster** » Sat Jul 02, 2005 9:39 pm

Hi Shirley:

Sorry to hear about your Mom's diagnosis. I hope now that it's been diagnosed, she will respond well to treatment and feel better.

Getting the diagnosis is half the battle, isn't it?

Take care - Momster :flowersmiley:

Tessa · Post by **Tessa** » Sun Jul 03, 2005 3:44 am

I am sorry to hear the diagnosis, Shirley, but as Momster said, getting a diagnosis is half the battle.

I hope the treatment will help to feel better soon.

Take care,
Love,

Tessa.

starfire · Post by **starfire** » Sun Jul 03, 2005 6:51 am

Thanks Everyone,
The scary thing about that disease is that in severe cases the spine can "fuse". Mom's is starting to already. What makes me angry is that none of her doctors ever sent her to a rheumatologist. My sister and I finally just insisted that she see one, My sister made the apt, and took her there. If she hadn't been in so much pain she wouldn't have let us bully her like that.

She will be on Celebrex and Sulfasalazine (provided she can tolerate them). Sulfasalazine sounds kinda scary itself. Seems like you just have to trade one set of problems for another, doesn't it.

Love, Shirley

P.S. Wayne, I forgot to respond to your post.
I think you are correct about all of us having the potential for this disease.
In fact I was wondering if the people here with so much back pain might have the beginning stages of it.

I sure hope Dr. Fasano comes up with a "magic pill" for our problems. That would be a miracle in itself!!

annie oakley · Post by **annie oakley** » Sun Jul 03, 2005 8:10 am

I am so sorry to hear of your mothers AS. I hope she will do well....I am hoping you are not predisposed. Tex may be right tho...we may all be at risk for it. Just what we all need huh? But I will have good thought for you.

moremuscle · Post by **moremuscle** » Mon Jul 04, 2005 6:58 am

Hi Shirley,

I am sorry to hear how your mother suffers and it is scary that the AS can be genetic, isn't it? That doesn't necessarily mean that you will get it, though

I hope the treatments that she has been offered are going to help her.

Have a Happy 4th, Shirley!

Love,
Karen

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