Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Where Did Your AS Come From???

Hi All,

Just wanted to say thank you for all the thoughts and prayers going out to Tiff, John Mark and Little Jack. I spent the weekend with them and they got some much needed rest. I will have to go back on and off for the next 7 weeks as Jack has casts now up to his thighs and doesnt understand what is going on, just hoping it will get better, he is almost up to 5 lbs now YEA!!!!

Ok, now for my question....

I have heard in different posts from the past that different people in your family have had AS a father, mother, grandmother...can you guys tell me WHO in your family had AS.

I have had AS since I was 28, it came on all of a sudden and hasnt let up since. I sat down with my parents many times and we NEVER could figure out where my AS came from. No one on either side of our family has it. My Dad comes from a family of 8 (6 kids) and my Mom came from a family of 8 (6 kids) and none of them ever had it. My parents even have pictures of my great grandparents and they remember them and cant remember then hunched over or in pain all the time.

Am I the ONLY one here who has had it hit from out of the blue??? Does this somehow mean that it could be environmental as well as genetics???

What are your thoughts??

Lisa

my dad has AS
and my mom s step sister, no clue if their dad (my grandpa) had it, mom doesnt

I was just diagnosed at the start of this year, but I have often wondered the same thing. My entire family is baffled... Though I really only know my mother's side well. My father's side is distant to me, and would take a lot of doing to get a hold of.. On the other hand, what I (and my mom) know of them, none have AS (or symptoms). I was just talking to a friend last night about the possiblity of environmental factors. Being that I was once heavily addicted to meth, which seriously lowers your immune system, among other things, I have to wonder if that didn't at least progress my AS more rapidly. My symptoms existed years before I ever touched speed, but seemed to worsen tenfold during the two years I was an addict. I'll be honest, I've never told my dr this theory, or that I ever used.. But I'm thinking I should. (in my defense, he asked if I USE rec. drugs, not if I've ever used them..)

My mother and I talked about this back when I was first diagnosed. As far as we can tell, I am an anomaly in our family. I have a second cousin out in Alberta who has some kind of problem - could be arthritis - with his back, but he won't go to a doctor, so we don't know if it's AS.

A few years back I had the opportunity to get my hands on my father's medical records from 1964ish through to when he died in 1991. I went through them with a fine toothed comb, but other than psoriasis and some age related arthritis, there was nothing like AS.

My sister won't get tested for HLA-B27 (I'm B27+) and she doesn't want to test the girls either. At least, not until some kind of actual problem shows up. So, we don't know yet whether or not it's carrying forward either.

Ah well, I always was ... unique.

Many hugs,

Hi Lisa,

I haven't been on much lately -- but I'm picking up that your little ones are having a time of it. Prayers and blessings.


My brother was mis-diagnosed with JRA at age 13. Was finally diagnosed with Reiters (also a spondylarthopathy) as a young adult (about 20 years ago)

One maternal uncle who is deceased had the classic AS posture with kyphosis and fusion.

Another maternal uncle also has AS. He doesn't seem to have too much kyphosis, but obviously has fusion in the cervical spine and has had problems with mobility.

My mother tells me that one of her maternal uncles (a great uncle to me) also fit the profile for AS.

Apparently, I'm the first female. I have scads of first cousins (my mother had 8 siblings) -- one younger cousin was having Crohns-like problems a couple years ago. I really wonder if others are affected with AS or AS related illnesses -- but I'm not in close contact with any of them.


Paula

Hi Lisa,

Good news about Jack!

I am on the same side of the fence as you--as far as we can tell, I am the first in my family to have this wonderful little illness. My mom is convinced that her father, my great-grandfather, had it, because he was very bent over when he was older, but I don't really think he did. He did have a very severe case of gout, but I honestly think his bad posture was simply osteoporosis and age. From what I remember of him before he became really old, he was never THAT bent over when he was younger, and no one seems to remember him complaining about his back. Now, a more realistic lead is my grandfather, same side of the family. I have very clear memories of him when I was a young child (unfortunately, he died of a massive heart attack when I was 10--at least he went peacefully in seconds while working in the garden he loved, a la Don Corleone) sitting with his back against a closet door and his chin in some kind of home traction device that pulled his head up and back (ie, straightened him out as it aligned the top of his head and spine in a straight line with his lower spine). I was just told at the time that Grandpa had hurt his back, and even my mom doesn't even honestly know exactly why he was doing it, but it did have to do with the fact that he had spinal pain and, obviously, alignment issues. I think there is a chance he did have it, but certainly not nearly as bad as me, and honestly, we'll never know if he did have it or if he simply had disc problems.

Other than that, some RA in both sides of the family, lots of OA of course, but no AS, no HLA B27 markers, etc. I truly was dealt the lucky genetic card, it appears. I have always wondered, however, if environmental triggers "activated" my AS, because all of my serious problems started after I took a one-week hardcore canoeing/camping trip in the wilds of Ontario. The very week after I got back, I developed severe ankle pain that my doctor treated with cortisone shots and later diagnosed as RA. I then went to a rheumy when the pain moved from my right ankle to my right knee, after which I had trouble with that knee for a year or two, constantly going in to have huge amounts of fluid drained out of it. After that, things just started to break down. The righ knee stopped hurting all by itself, and soon after, my back started to hurt and so did many of my peripheral joints. Took about 7 years to get a correct diagnosis of AS (at age 25), and by then I was a full-blown case with bamboo spine and kyphosis already very evident. The rest, as they say, is history.

Brad

I'm the only one-no Hx of auto-immune diseases in my family either... although I wonder about my mom and little sister. My mom suffers with the same back pain as I, but is not interested in having it Dx'd. My sis has back, knee and ankle pain, but is quite a bit younger than I-I've sugg. she tell her docs about my Hx, but not sure if she has. She's actually becoming disabled by her problems, whereas I'm quite mobile.

Hi, I'm new here but in answer to your question....I have been diagnosed with AS. No one else in my family has AS that we know of. I also have a rare genetic disease(erythropoetic protoporphyria) which is supposed to be inherited and no one in my family has it either. Aren't we the lucky ones...

Hi Lisa,

I have not been able to track down any other family member with a dx of AS. However, my great aunt on my mother's side had RA.

In the past people with AS were dx'd with RA because there was no distinguishing feature. However, that changed when it was discovered that some people with RA had the HLAB27 gene.

Whilst a majority of people with AS have HLAB27 there is a minority who do not fit the mold. Even worse, there are people like myself who have turned into RA positive and ANA positive but who have AS.

I still suspect that my AS is a result of trauma, and I think that it goes way back to when I was 4 and was involved in a near fatal car accident.

I have thought long and hard about all of the little signs that existed and the next most logical sign would have to be the collapse of my feet - it was first noted that I had flat feet when I was about 11 years old. Prior to that time I did not know that there was a foot problem. My ankle sprains occurred about a year after this was noted and after I had to wear the most disgusting orthotics that you can imagine. They were made of steel. The only other distinguishing feature at that time was the onset of dandruff and bad skin.

So there are no clues as far as family members are concerned. I did not know any of my grandfathers. My mother has Parkinsons and she cannot remember a lot of things and so I have no one that I can ask.