Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Who thinks there will be a cure?

From what I understand is this is totally a genetic problem with us. I'm thinking a cure will be at least 10 years out.

The fact that my bones make my blood a certain way and that in turn is confusing my immune system isn't an easy solve.

I feel I don't have a disease per se; I am the disease, its my genetic make up.

there is no doubt there is a huge genetic susceptibility in AS but it is not entirely genetic as only 40% of of monozygotic twins (identical genes) both develop AS indicating that environmental factors are also necessary.

You need the genes. The reason the other twin doesn't get it does not mean its not genes that are totally responsible; even when we see that other factors must come into play. If we fix the gene problem then environment or what ever else is a factor wouldn't matter at all. Thats what I mean by a gene problem; even though its more than that, we fix one thing (gene) to fix the whole problem.

absolutely. you can't develop AS without having a genetic predisposition.

that is exactly what it means. if genes are totally responsible then identical twins will either both have AS or neither will have AS and that isn't what happens.

that is true but you can also say that if you can change the environmental factors then the genes aren't a problem. in the twins without AS their genes are not causing a problem.

I agree jroc. I just get hung up on not being able to do what someone "normal could do". Not eating starch is something I should not have to abide by to try to avoid problems. Just like not putting myself in some environment to stay safe. These things aren't cures they are just another layer of annoyance that might help. The one twins lifestyle must have not have made their AS turn on.

As for the cure. My take on it is you have to "cure people that don't show any signs" to be sure to avoid AS at the genetic lvl. So one would not have to worry about triggers in the environment or diet. If a AS gene package got taken out of the equation then nothing else you did would matter.

This is why I think it will take a really long time to get concrete answers and a cure for all.

great description. there are thousands of different things that people with AS could do that potentially reduce inflammation levels (some more annoying than others) but these mostly only modulate disease activity rather than eliminate it.

that's true. i just hope that both parts (genes + environment) get investigated equally as the evidence suggests that both play important roles and both offer potential targets for treatment.

Hey, Skywalker:



IF we can 'fix' genes--and certainly this prospect is being worked upon in academic circles--it would technically be a cure. And You are right--we cannot fix the environment to the point of "CURE," but we can modify that portion of the environment that causes us the most trouble; we can modulate the substrate upon which the provocative pathogen procreates.

According to Dr. M. H. Khan I believe, AS is only 14% genetic--the rest is environment. Apparently, he has made the decision to actively NOT modulate his own substrate (he has AS and perhaps also had an osteotomy), with average and expected consequences.

It is MANY TIMES easier (and much smarter) to modify our environments than to WAIT and DEGENERATE until we are able to have our genes modified. Do what we can do NOW, so that there will be a later opportunity.

HEALTH,
John

If it was 14% Genetic then would eliminating that 14% get rid of AS and AS susceptibility?

For example. You cant make a combustion fire without oxygen, even though that's only 1 part of the equation. Simply eliminating that 1 part makes all the other aspects although present null and void. No matter how combustible the other materials present are, you'd never get a fire.

This is my take on how the gene aspect of Ankylosing Spondylitis would solve our problems.

Hey, Skywalker:

The 14% is a statistically-derived risk factor that cannot be "eliminated" because it is a combination of unrelated mechanisms; these cannot be isolated from the problem of AS; cannot be 'culled' because it is a shared risk associated with every member.

If You suggest we could practice something like 'culling' I suppose the B27 carriers could all be eliminated, but there are other MHCs that produce AS, so these should be identified, too. Still, AS would be hundreds of times more rare then.

I do see Your point and You are certainly correct--without any AS-prone genetics, nobody would ever get AS again. But it is only a philosophical construct: Those of us who have AS should remain practical about treating it while we are alive.

HEALTH,
John

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