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

Hi Lori

You did not actually say it but I gather Eric is your younger son. I normally assume everyone else is writing from America although 'colonial_AS_kicker' suggests somewhere else. I accept there is some risk in not being accepted for insurance policies based on knowledge of presence of the gene,but often the perception is worse than reality. In much the same way, parents are so often paranoid about the security of their children far out of proportion to the real dangers.

Insurance companies will find a way to wriggle out of paying any claims anyway.

I am intrigued by your statement - "If I did not have private insurance, then Eric would never of gotten on Enbrel and be in remission". I know it is not related to the topic of the posting but could you expand on this. If you have already written on the subject on another posting, I would appreciate you directing me there. I know Embrel attracts a lot of interest on this website. Is it another NSAID?

Thanks for your perspective

Wally

Hi Wally

I am sorry, I speak of Eric so often I assume that everyone knows that he is my son. I know.....bad Lori, I shouldnt assume.

Eric is 13 years old, and was diagnosed at 9. He tried all the drugs and all the drugs failed.

I know about insurance companies trying to wiggle out of paying for the big money drugs, and they can be quite slippery when they are wiggling too.

When Eric went on Enbrel the first time, he was between a wheelchair and crutches. He could not walk without aide.

Now being the stubborn, persistant mom that I am, I wouild not accept that this was the life my child would have if there was a way out there of preventing it.

That started my battle with the insurance company. It was not easy or quick, but as the saying goes.....where there is a will, thre is a way.

I found my loop hole, and Eric got his Enbrel. Just a couple of days after his first shot, Eric was walking.....all by himself.

Within a month he was back to playing basketball.

Just over a year, he was in full remission. No drugs at all.....including Enbrel.

Sadly, 11 months later, AS came back in his hips (it first affected his knee).

Eight months after he started back on the Enbrel, he went back into remission. Hopefully it last this time.

What Enbrel is to us is a miracle. It gave a little boy back his life.

What Enbrel is to the medical world is a DMARD. Along the same lines as Humira and Remicade.

Erics story is out there in different post, but it is easier to just tell you than it would be to try and find it again.

If you do get the chance to try it, I would say to go for it........It does not work for everyone, but it sure works good for my boy!

Hopefully this is what you were asking. I am at work, and my boss keeps poking his head in, so I gotta fly.

If I totally misunderstood your question, ask again. I will do my best to answer it.

Lori

Hi again Lori

I hope your boss didn't spot you writing the Email. Where I am it is about 11PM at night so I don't have that problem.

I am very impressed with your information about Enbrel and I am going to really look into it. If it is not an NSAID that will be something as I only started my arthritic symptoms after a course of AI 'Mobic' . After reading that on a recent test 2/3 of those taking NSAIDs had significant damage to their gut lining I know I have to get off NSAIDs as soon as possible.

I suspect from what you wrote that the drug is expensive so I will have to check if it is on the Australian government subsidised list.

It's bad enough when mature people get the disease but it's very sad for a little boy. Let's all hope and pray Eric can stay healthy.

Good luck

Wally



Wally

Hi there,

I'm a 34 year old father of three. I think I'd be pretty lucky to get away with having none of them develop AS.... I can only hope. It's pretty obvious (or it will be as they get older) that I have a bad back. I'm sure that I'll eventually have a conversation with them to explain the situation. I don't think I'd neccesarily tell them that they're genetic time bombs. Thankfully, I've got some time to think about it because they're only 4, 3 and 1.5 years old (see attachment at left).

Best to you,
Michael

Hi Max,

I must say, you sure have cute attachments!

Hi ! Im a newbie to this forum. I am 32 and have had AS since age 12. I am HLA-B27+. niether my parents or my sister have been tested for the gene. A couple years ago I had discussed with my mother about if she or my father had ever thought of getting tested and if she ever thought about having my sister tested. I at the time was curious as to who carried the gene.
I have determined that my mothers side carrys. I am the only one dxed with AS and Crohns but my mothers sister has MS and recently my cousins daughter was dxed with IBS.
I dont know if I would tell the kids. One one hand it could be benificial and on the other it may cause worry and stress about the future for no reason.

Take Care!
Jules

Hi Michael

I think your judgement not to inform the children matches that of most other people. I had my kids tested because my RA specialist recommended it. Perhaps if I had sought these views on kickas earlier I might not have done so, although I was curious.

They haven't been told that they are both positive and I will now fob them off if they ask. However, because I believe I contracted AS because of NSAIDs, if they move a long way away I would want to tell them they were positive and stress why they should never take NSAIDs.

Besides I can't help feeling I would have been angry with my parents if they had known and withheld the information from me.

Hoping your kids (and mine) never have a problem

Wally

Hi Jules

I can understand how you would rather not tell the kids at this stage.

As long as you are around them and they show no AS related symptoms there is no need. But if they were to, say, move overseas, what then?

Each has only about a 1 in 15 chance of getting something serious so the odds are on their side.

Good luck
Wally

Hi Wally
Ive had time to mull it over!
If I were to be in that kind of situation I would probably decide to tell them when they graduated into Adulthood. They certainly have a right to know about B27 and all its connected to even though the chances are good that they wont have to go through any of it. That way the information is out there...just in case.

Wishin ya good things!
Jules

Hi Jules

Telling them when they turn adults or even later if they remain close at hand is not a bad idea if they haven't shown some symptoms or moved away before.

So far they haven't asked again about the results. I'm going to tell them that when I was diagnosed positive the doctor's receptionist called to arrange an appointment. But she hasn't called yet to arrange an appointment for them so they can draw their own conclusions. It's technically true.

Wally