From the moment I was diagnosed one of my very first thoughts was,
would I pass it on to my son?? or even grandchildren??
Of course as we all know there really is no answer to that we just hope we don't.
But, no matter how hard I try to put it out of mind, which is pretty difficult when your constantly reminded of it, it's always there at the forefront, never going away.
Just hearing him say "mom, my knees hurt "or my fingers are sore etc, the panic goes through my mind, is it? I try desperately not to show my panic not to give the slightest clue to my worries.
I'm so thankful that he is a fine healthy young man now (16 on wed!!) I may sound like an over protective mom but I'm not, in fact I've always tried to move focus from health problems when I can.
He understands my RA perfectly well, then again he as never known me any different, never seen me without it. Even when I go for my appointments at the hospital everyone knows him and have done from when he was a baby, helping me feed/change him when I was in for treatment.
He will do things without asking as he knows I cant, so I am lucky in that way I suppose.
However, if he did get RA, or his children I think I would feel terribly guilty. nobody else in my family as it, my mom/dad sisters,brother,aunts,uncles not even my grandparents have it.
I know I shouldn't worry but I can't help it, as I know that science and research is improving all the time and they may even find a cure in the future!
I have had RA for a number of years and no one in my family or my wife's side had it, both my sons are over 30 and thank God show no signs at the moment. However most of my old work mates when I worked in the print have got it. I think it didn't help working long hours, cycling to work in the wet and then standing and kneeling on concrete floors. So if they look after themselves and take codliver oil and eat fish they will be fine.
Me too, I feel exactly the same way, I'm told so often not to be silly...are you?
My 4yo woke up screaming in agony with a sore knee a month ago and my first thought was 'Oh my God, it's RA'.The fact that it's still bothering him, despite doc saying it's fine is a constant worry. I hope it's not RA but I can't help it, I feel the guilt burning inside me with every limp!
It's such a cruel disease but from our point of view as parents its seems to increase our worries and make normal everyday aches and pains more ominous than they really are. I never had any concerns with my daughter at all sailing through every knock and scrape and illness. Now I have this heightened sense of foreboding, solely as a result of the RA. I too hide behind my 'Mummy Mask' and carry on as normal but it's tough!
I have never been given a real reason for developing it, there is RA in the older memebers of my family but even my mum is in the clear after her RA scare. I guess we are the unlucky ones and if worse came to the worse then our children will already have a good understanding of the disease and although deeply disappointing, it'll be a lot less scary for them than it was for us?!
My daughter did know me 'before' and we have both struggled to come to terms with the changes bought about through the RA. She has had to grow up quickly and become more independant at 8yo than I would have wished for her. She's seen me in pain, in tears and suffering a lot over the last 3 yrs which is difficult for any grown-ups to take let alone for someone so little. Talk about feeling guilty
The only thing that keeps me going and helps to quell the panic is that everything you read states that RA is NOT hereditary...that it's choice to attack is random and not influenced by us parents. Phew, only another hundred or so normal things left to worry about now then...! And I've got two of them - no wonder I'm going grey...
I really hope that you and your son enjoy his birthday celebrations. Wow, big 16, I bet it doesn't seem like five mintues have gone by let alone all those wonderful years
Hi Jo, thanks for the feed back, not just me then? So sad when I read about you 8yr old having to grow up so quick, all those changes for her one minute her mom's so fit and healthy and the next, well you no the rest.
We can't help feeling guilty it's normal I suppose.
Life's just so unfair sometimes, things could be worse I suppose, that's what I keep telling myself anyway.
Nice talking to you Jo.
Take care.
mand xx
Oh Mand it's not your fault you have RA. It chose you but I know, you will always worry. Wouldn't be normal if we didn't worry about our babies. I have one daughter who already gets "weak wrists" and I just think Huh oh... what can we do? Life's a roller coaster... and hope you and your son have a nice day on Wednesday. take care x Julie
Hi Julie, life certainly is a roller coaster, hope your feeling/sleeping better and your throat is ok now.
thanks
mand xx
Mand, I really do understand how you're feeling. I have had a recent scare when my 9 year old suddenly developed painful feet and limped for weeks. All I could think of was have I passed this on to him. He seems to have recovered but it is at the back of my mind all the time.
I think as mums (no offence dads) we are hard wired to care & protect and it is so easy to feel guilty or responsible when our children get sick or have disabilities. I know I went through it before when I found out my older 2 boys were autistic. I was convinced I'd done something wrong or I must be autistic and they had inherited it from me. I even went as far as having myself tested! It seems ridiculous now as I'm writing this, but I think it's just something that is ingrained in us.
Happy 16th Birthday to your son on Wednesday.
Ann
x
Think some times it genetic as they asked my parents medical , history.., some times its random, there is evidence that severe stress or a virus can trigger ra??, no one really knows, tThere was an ohha and work as it was thought my hep b vaccination that i had (health care worker!!) triggered mine, cheers nhs ,or it could be stress, cheers again!!, no definitive proof , fortunately of unforfunately.... depends how you look it, just try the best you can in terms with life/ work/ meds/ diet/ light exercise/ humour/ novel writing or whatever floats your boat, ali xx
Hi Mand,
It's only natural to worry and want the best for our children. We don't want them to go through what we go through. All four of my children have only ever known me with RA ... when I first went onto anti-tnf my daughter commented "Mum, I have never seen you run up stairs before." The simple things in life we all forget at difficult times.
My daughter has hyper-mobility disorder and my youngest son, 16, who saw a rheumatologist in January, has also been diagnosed with it. I don't have hyper-mobility nor does my husband but it seems there are likely to be some genetic factors at play here and I have been advised to keep a watchful eye.
A lot of research is currently going on into the part genes play in rheumatoid disease and there are certain links that seem indisputable. Will be interesting to see what is published on this. In every case there must be a 'trigger' that sets the RA in motion; mine was childbirth but it could almost as easily have been glandular fever. If only they could alienate the trigger factors ... if only!
Two of my Aunts on my mothers side had it as did my maternal grandmother! I had a test in my early thirties and did not show positive for Rheum factor! fast forward ten years and lo & behold there it is large as life POSITIVE for Rheum factor, doc said 'that can happen' sounds odd does'nt it. Stress triggered it in me, I know that for a fact, as my mum has'nt got it , I sort of thought mayb my nieces would be at risk more than my own kids? Dunno!
My gran had RA, but apart from me no-one else in our family has it.
Although a few off them think they may have it in there little finger or big toe argh!!
Oh yes, I got asked how my RA started the other day as someone had a sore little finger and wondered if that was the start of it for them...I just replied "If it was then you'd know" and left it at that!!
in reply to
Oh Julie, you so made me laugh with that last comment, so many people I have spoken to have also said the same, OH! I have it in my toe/finger. It makes you want to scream, they have no idea.
Hello Mand - as a Mum of two little ones I worry about this too even though there doesn't seem to be a a genetic link in my case - there is no recent history of RA on either my Mum or my Dad's sidebut you can't help but wonder....
Mand -- I feel the same way. I look at my daughters and the fear grips my heart. My 4 year old was complaining about sore fingers, but I think she was actually just copying me! I took her through all the range of motion exercises and she seemed fine. I worry most about her because she has had some eczema throughout her short life and my Rheumie tells me they are related.
No one in my family has RA as far as I know, but there are lots of auto immune disorders floating around the gene pool. I haven't told my mom yet, because she's been struggling with her own health problems, and I know she will feel badly.
All we can do is watch and hope and be grateful that we have such good medicine these days.
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