Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group B27+? Who to tell?

Hi there

I have been recently diagnosed B27+ and so have both my children (9 and 11). The advice of my RA specialist was to notify my family as knowledge of the gene can affect future treatments in the case of symptoms relating to the spine / skeleton. But he also advises that if diet affects my condition just take more NSAID so maybe he doesn't know everything.

Both my parents are dead so I don't know which one carried the gene. I have told my siblings and have been surprised at the range of responses. An elder brother, with only adopted children, has taken a great interest, been tested himself and looked back into the history of the family to identify which parent most likely to be the carrier. On the other hand my sister, with children and grand-children, didn't want to know.

At the moment I am stalling on notifying the kids they are positive while I think about it. I would be interested to hear the experience of others.

Wally

Firstly, can I say being positive does not automatically mean anyone HAS or will get AS. Did your rheumy mention this to you at all?

Secondly, my son is showing 'signs' of 'something'. Could be growing pains.......but I am dubious. I myself started having joint pain at about 14.
At his age, 8, I am very aware of the situation, but I havent discussed it much with him either. I've been tested twice for B27, and am negative (yet have possible AS, xray changes, all the symptoms and associated ailments).

I dont think children need to be tested unless they have current problems, and I dont think they need to be told either.

Just my opinion.

Hi Amber

I am aware that not all B27+ get AS. I extracted the quote below from this website -

"It is estimated that approximately 7% of the conglomerate human population has the characteristic marker antigen B27, but less than 20% of these will get AS. Of these, perhaps 35% will actually require diagnosis and treatment; most will be either sub-clinical (not ill enough to warrant medical attention), or have totally inconsequential or unnoticed levels of this condition. "

Based on these figures, those who will have a real problem represent about 1 in 15. Still quite a worrying proportion. I am soon going to get a second opinion about my own condition from another RA specialist and will ask him whether any change in lifestyle for the kids would be justified based on the B27+ testing. I played basketball, football and bowled fast (cricket) in my youth and had disk problems from my early 20's and later a spinal fusion in the lower back. Should I steer the kids away from sport involving jumping and compression of the spine? Whether or not my disk problems are related to the B27 they still inherit the whole package.

Our family doctor knows the kids are B27+ and that is enough I think at present. My daughter already has a knee complaint I had about the same age (Schlatter's disease) but this is growth related and I doubt it has anything to do with B27. However I intend to tell them sometime - either when they move away from us and our doctor, or when there is some skeletal related ill-health. I cannot help thinking I would have been angry with my parents if they had known and withheld the information from me.

You didn't mention other relatives. I had an aunt who was wheel-chair ridden for most of her life with "arthritis" (unknown variety); a half-brother who told me all the disks in his spine were flattened; one cousin who had a mystery complaint affecting his body which was eventually put down to a lack of gold; another cousin who has her neck in a brace. All of these are on my father's side and I have notified them all in writing (except the first who is now dead) but no other relatives. But none have replied either by phone or in writing! I feel I have done my part - whatever they do with the information is their business.

Thanks for replying

Wally

Hi, Wally:

I think a study which should be conducted is periodic measurement of IgA-Kp on B27 children to find out if there is a common age of onset, common event, etc. I do wonder whether there have been actual cases of NSAID-induced AS!

Some disagree with Ebringer's work (although results are hard to argue against), but it does imply that more severe AS can be prevented, especially with early intervention; then it is more minimal (the ounce of prevention). Knowledge is power in this case, and some educating of the children early enough can make all the difference in the world.

Good luck to You and your children,
John

In my quest for imformation, I ran into the ones who buryied their heads under the sand, and the ones who wanted to know more. I was trying to figure out which side of the family, mine came from, and it looks like both sides!! Neither of my parents had AS, but my sister and I both do, and possible one brother. I called a many times removed cousin (haven't seen her for 20 years), and she was great. Her oldest son had just been dx'd with iritis, so maybe that was why. (It would be interesting to know if he is B27+ or not.) I found iritis and back arthritis on BOTH sides of the family, but no one actually dx'd with AS. Sis and I got a double whammy from the gene pool.

I have 4 children, and made the decision to NOT get them tested. My sister feels the same way. The test in itself means little, and that piece of information in their file could mess them up later in trying to obtain life/health/disability insurance, a situation where no news is good news. We'd cross that bridge if and when we came to it. My oldest son started having joint pain a year ago, and I requested the test then. It came back negative. Perhaps a false negative, but it looks good on his record. In the meantime, he is young, active, healthy, and enjoying life. He has learned the proper way to lift things, so he can minimize damage to his back. That's a good thing, as we usually don't think of that until too late.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Hi again,


In answer to you, none of my family have been tested for the gene, or have been diagnosed with anything.
My father started suffering back pain from 15, and lasted til he was about 30. He tells me he was stiff as board in the mornings, and would wake up in the night constantly and felt his back was 'breaking' at the base........ he is 61 now, and still suffers bouts of back pain/stiffness, and problems with one of his shoulders. He gets ankle pain, and wrist pain, and bowel problems, and suffers more joint pain in the winter. He reckons its just 'rheumatic pain', and isnt bothered about being tested at his age - none the less, I would like to know more......

His father was exactly the same, as it happens.....

My mum also suffers odd bouts of sciatic pain, and low back pain/stiffness, and IBS She says she is better now that she is older, but still has aching legs etc during changes in the weather...

One of my sisters has weak wrists, wrist pain, tender limbs at times, IBS, and as a child, her legs always used to just give way. She also has strange rashes dr's cant explain, and is always ill - flu like.

My son is quite active, as you can imagine! I shant stop him enjoying life right now. I suppose as long as he's able to be on the go, all is OK.
Like you, I was an active kid. Played hockey for the school, enjoyed high jump (until back pain started), and participated in netball, kickboxing, and taebo in the past few years. These days I stick to less vigorous things, enjoying my stretches, swimming and long walks when the feet allow.

One more thing, do you know if the gene is connected to either a mum or dad, or either?

All the best

Amber

Hi John

Your remarks about NSAID induced AS are pertinent. I had no general arthritic symptoms and no sensitivity to food until I took a course of the AI ‘Mobic’. Sure I have a history of disk problems, my disks are a bit calcified and I am B27+ but it was only after I took the Mobic course for 3 months that I developed all these new symptoms. Even now, my daily fluctuation in condition due to diet affects my fingers, hands, shoulders, arm muscles, leg muscles with my back mostly unaffected.

That is another reason I will tell my kids they are positive if they leave our family doctor. He now knows enough not to ever recommend NSAIDs for them but another doctor may not.

Thanks for your help

Wally

Hi Cindy

With both parents affected you didn’t have much chance of avoiding it did you!

Your remark about knowledge of the presence of the gene affecting insurance outcomes probably explains why there are not more responses to this posting. Most people may just want to keep quiet about it.

My experience with insurance companies has led me to now avoid life or disability insurance. Here in Australia we have a government administered socialised health insurance scheme so that would not be affected by knowledge of the presence of the gene.

Since I believe my condition was caused by NSAID I will tell the kids they are positive when they move away and stress they should NEVER EVER take NSAIDs themselves.

Thanks for the contribution

Hi again Amber

I am reminded that I should read carefully what has been written before responding. I read your first Email again and now realise you are B27 –ve. So you didn’t have anyone to notify even if you wanted to.

I still do not know positively whether my father or my mother was the B27 carrier although all the indications are that my father was. I cannot recall anyone on my mother’s side every having any skeletal related problems and there are many cases on my father’s side. All could be confirmed if my half-brother (same father) took a test but he has never responded to my letter.

Thanks again

Wally

Hi Wally

I am B27+ but no AS, same with my Mom.

Eric is the first and only (so far) in my family to develop AS.

My older son has never been tested, and has no problems, so he will not be. If down the road problems arise, then he can be tested.

Neither my brother or sister have been tested, and again no problems. Same parents.

I got tested as Erics Rhuemy asked me to. Something about a study that was being conducted and how to treat depending on what parent carried the gene.

My mom got tested because she wanted to know.

I dont know why Eric contacted this disease, and I wish with all my heart that he did not, but the family is all aware of the gene. We just dont go looking for things......

Cindy is right with the insurance. I am not sure exactly how it goes over there, but I think that you have the government insurance and then a lot of times need to take a private policy out for things the government wont cover.....it is the same type of thing here.

Some can get on Medicare or Medicade, or the children can get on a state run program, just not as good as private insurances.

If I did not have private insurance, then Eric would never of gotten on Enbrel and be in remission.

I guess I am getting off the track here....sorry....I have a way of doing that most of the time.

Have a great day!
Lori