Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group freaky, scary discovery

First, thanks to everyone for welcoming me to this site and for all of your kind comments for a newbie. We have lived in our house for 17 years, since my daughter (who was diagnosed with AS this year at age 19) was only 3. My daughter's symptoms started when she was 16. Her older sister (age 26) still lives at home and is having lower back pain problems now. Anyway, tonight I was chatting with my next-door neighbor who has lived there for over 20 years. She has been having bad problems with arthritis. I asked her what type of arthritis she has, and she said, "something very rare called ankylosing spondylitis"! What are the odds of this? I am freaking out. None of my extended relatives from all over the country have any type of autoimmune or arthritis, but my next-door neighbor has this same rare disease. Now, on top of the guilt I feel about passing on the HLA-B27 antigen, I think that living in this house has somehow triggered the AS.

Hi Tina,

Don't feel guilty about passing on your genes. Anyone who decides to have children is passing on genes for all sorts of things that they probably don't know about. Wait, that didn't sound as comforting as I had hoped! What I mean is, it was not your parent's fault that you have AS, and it's not your fault if your child has AS. Not everyone with the gene gets AS, and many people without the gene DO get AS. So, don't feel guilty, if you can help it.

As for the house making you and your neighbor ill, while that CAN happen with certain types of mold and other such things (I used to work in environmental/occupational medicine at a lung hospital), it is generally thought to be more related to respiratory illness, rather than generalized auto-immune/musculoskeletal issues. If you are concerned, you can always get an air quality analysis of your home, which would show any VOCs (volatile organic compounds - usually off-gassing from paints and whatnot) or fungus, and anything else that is floating around in there. Unless you're living near toxic waste, though, and unless your house is really new, I doubt you have anything like that in your house. All this is meant to reassure you, by the way, not tell you that you are wrong for feeling nervous! Of course you're nervous! But I bet it's just coincidence. Coincidence can be freaky, too!

Hang in there and keep asking questions.

~Molly

Thanks Molly. This sure seems weird to me. I've talked to doctors who have never heard of AS, and now the lady next door has it, too. It's just freaking me out.

Oh, absolutely! It is totally weird. When I told my boss that I finally had a diagnosis (and an explanation for my frequent calling in sick, including the calling in "too tired to come to work" that I got written up for - yeah, turns out you CAN be too tired to come to work when you have an auto-immune disease. In your face, boss! ), it turned out that my boss's boss had worked on clinical trials for one of the biologics. So, he knew all about it. Weird, right? The upside is that now they understand and no longer treat me like a lying freak. Ha!

Anyway, that was a bit off-topic...

Hi Tina,
Wow that is freaky about learning about your neighbor.

"I think that living in this house has somehow triggered the AS"

I have wondered about the same thing....
I'm the only one in my family history with any spondy disease that I know of, plus I am HLA-B27 positive. As far as houses go, my parent's house is where my AS started, and it was a nice smaller house in great condition, but it only had an oil burning floor mounted furnace in the floor with no venting throughout the house. We used to burn our feet on that thing. Later my dad went to Sears and bought a wall mount gas furnace that worked much better mainly because it had a blower motor, but he still had no form of venting to distribute any heat. I used to really get sore in that house, but only because of the heat distribution problem in the winter. After I got married i rented a house that hasn't been maintained and needed to be re-insulated. It had a prehistoric furnace that knocked as it ran, and the lack of insulation let all of the dampness come in from the outside. A closet had some mold on the walls because of the dampness. My AS was acting up really bad back then. I'm glad I am out of that house. Where I live now is a 23? year old apartment, and has new windows and roof already (we had storm damage at our complex) so it's not drafty at all. However we have cement floors under our carpet and tiling and it makes the atmosphere in here seem like that of a garage, especially in stormy and winter weather. The floors are too cool is what I mean, even in the summer. Anyways, I just thought I would share about the houses part.

Please don't feel guilty about passing a gene onto your kids. There's nothing that you could have done to prevent your kids from getting it.

take care,
James.

Everything I read says that there is some type of "environmental" trigger, which I know could be food poisoning or something, but still......I've read that women only have about a one in 10,000 chance of getting AS and my neighbor has it too. Just spooky. We live on the water, so maybe that has something to do with it, or the grass or something. Who knows? This is all still new and scary.

Hi Tina and welcome to KA...Actually, there is a syndrome that affects people who have been exposed to high doses of Fluoride for long periods of time...they get the fusion and all, it was discovered in a group of people in a small community that lived next to refinery that had something to do with fluoride, 50 people developed what was initially dxed as AS but luckily a doctor realised how high that number was demographically, here's the link to a news article with pictures that clearly show all of the patients in a stooped position, this group worked at the plant itself.....it's a very interesting article..

http://www.fluoridealert.org/health/bone/fluorosis/arthritis/spondylosis-litis.html

Well I'll jump on the "it's just a coincidence" bandwagon too.

A good buddy of mine has AS. We sort of lost track when I joined the military and I didn't know what his "back condition" was called. When I told him about my diagnosis he told me that he had the same disease.

I've also met at least three people I work with who have a spouse or immediate family member with AS. I'm sort of getting the feeling it isn't as rare as I thought?

I can understand why you might get spooked, an "unknown environmental trigger" could mean just about anything. There is no reason to worry about something you can't know and can't control. A few people who happen to live in the same area having the same rare disease is certainly odd but try not to get yourself worked up - it could just be a statistical anomaly.

Lastly, if only one in 10,000 people get AS then there would only be about 30,000 AS patients in the U.S. I'm guessing this is an old stat back from the days when AS was misdiagnosed even more often than it is right now. I'll bet it's a little more common than that ratio would suggest.

My philosophy is that life is too short and too precious to waste worrying about stuff we can't do a thing about. I try to focus on the things I can control and accept the rest...it's a work in progress, of course.

Best of luck to you, your family and your neighbour.

Hi Tina - welcome to kickas. When I first found out I had the AS I called my girlfriend (who has had major symptoms for years with SI nerve, back pain etc. She even had a breast reduction hoping it would help) to tell her what I had and suggested she get tested also. Her response floored me... "I've had that for years and take humira every two weeks". I couldn't believe it!

I think that's right though that the percentage numbers are off of people who suffer with AS. With the testing for the HLA-B27 it can be defined easier and alot of people who previously were labeled "arthritis sufferers" are now being put into their proper diagnosis catagory.

As far as causing your illness and your children by being in your current house. Don't dispair - "environmental factors" happen everywhere. This disease is global and I don't know if statistically there is a location that would be a buffer. Don't beat yourself up as this gift was passed to you thru your genetic makeup and just happens to be a gift that keeps on giving meaning your children and your children's children. If it wasn't true than none of us would have it. Just try to make good decisions about your health with diet and exercise. Use it or fuse it they say. Of all the genetically passable diseases I often times think it could have been worse. Take care...Sue!

I suspect the source where you read that only 1 in 10,000 women will get AS is very dated. Women were once believed not likely to get AS at all.

AS presents differently in men and women. The probability of a woman getting AS is not 1 in 10,000.

I have read folks who said it could be an environmental trigger and others who think absolutely not.

I would not conclude that iits your home or your neighborhood.