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17 June 2012 @ 12:28 am
Hello :)  
I haven't posted here before and honestly, I don't have lupus. My mother does have it though. I was just wondering whether anyone here had any children with problems because of it? I was born with complete heart block (which I've had a pacemaker for since I was 4) and my mother has told me that it was caused by her lupus. Of course, being born with a weak heart has caused many other problems as I grow older but I can cope quite well for a moody teenager.

Since she got diagnosed as she was having me I've always thought that it was my fault that she was ill, like it was because of my problems that caused her to be sick? I've grew up thinking about this and it was only a couple of years ago when I asked her. She said that it was nothing to do with me but I don't know if I believe her. She's not one to talk about her condition and I know practically nothing about it. The only things I've heard are usually the worst cases (as you usually do). But I just wanted to know if there was anyway that it was my fault for her being ill? I've just spent most of my life feeling guilty about it, and even when she said it wasn't my fault I still felt guilty. There's still the countless hospital appointments caused by me which she always supports me even though she has her own problems.
Ro - The Apocalypse Girlapocalypsegrrl on June 17th, 2012 01:19 am (UTC)
It sounds like you might have had a brush with neo-natal lupus. According to Wikipedia, it can result in heart block and other health problems, even if you never get officially diagnosed with lupus yourself. According to the article, less than %1 of women with lupus will have kids with neo-natal lupus symptoms - so most likely it's just a lousy break of bad luck, not anything that anybody (you or your mom) could have done.

Nobody in my family had lupus until me and my mom nearly drove us both crazy trying to find some reason why I have it - was it the time she took me sunbathing at the beach, was it from my grandmother's RA, was it because she had kids "too late" at 32 (though she had my brother at 35 and he's fit as a horse)...seriously, she dug up every random possibility of why my lupus was somehow her fault. When weird, random things happen, people want a cause - that's natural. But feeling guilty about something that nobody could possibly have anticipated or controlled, doesn't do anybody any good.

Here are some other links about neo-natal lupus that might give you some more info:

Good luck to you and your mom.
takemypetals: Dolltakemypetals on June 17th, 2012 08:51 am (UTC)
So you think my heart condition could be possibly caused by me having Lupus? I've thought about whether or not I had the illness too but my mother has always shrugged it off and said for me not to worry I'll be fine. I believe that about less than 1%, I can never find someone with the same problems as me lol xo
Ro - The Apocalypse Girlapocalypsegrrl on June 17th, 2012 01:05 pm (UTC)
I'm not a doctor, so I can only tell you what I'm reading online, but neo-natal lupus isn't the same as SLE or discoid lupus. It seems to be more a condition that is more likely to be triggered when a mother has lupus and has a certain combo of other gene things that I know squat about. When you mentioned having a heart block, that's what made me think about it, since heart blocks look to be a common result.

You can certainly ask your doc to test you for lupus if you're worried about it, but the neo-natal thing seems to happen exclusively at birth - you may never have any lupus symptoms yourself.

The point is, that you and your mom have what you have - it's nobody's "fault" and neither of you should feel guilty about some weird random occurrence of genetics that nobody could have forseen.