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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.
 
 
 
accio brain!: breachxxdevixx on June 17th, 2012 12:57 am (UTC)
There is a genetic link to lupus, so people who have it are already predisposed to it. It's just a matter of when it will pop up. It's one of those 'it is what it is' type of things and you shouldn't beat yourself up over it.

Edited at 2012-06-17 01:39 am (UTC)
takemypetals: Dolltakemypetals on June 17th, 2012 08:56 am (UTC)
While the idea that there was nothing anyone could do she was always going to get sick isn't a nice thought, it is a comfort that I wasn't the one to blame. Thank you xo
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:
http://www.neonatallupus.com/neonatal-lupus.html
http://emedicine.medscape.com/article/1006582-overview#aw2aab6b2b2

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.
Sephira josephirajo on June 17th, 2012 01:23 am (UTC)
While most cases of lupus are diagnosed right after pregnancy I can almost promise you that your mother had problems a long time before she ever had you. I got my diagnosis after having my daughter after over 15 years of medical problems went on ignored - they only noticed it right after my daughter was born because my kidneys started to fail during labor. SO yeah, can pretty much promise you that it is in no way something you accidentally caused.
takemypetals: Dolltakemypetals on June 17th, 2012 08:52 am (UTC)
Thanks :) It's just that I was diagnosed first. My heartbeat was so slow when my mother was carrying me the doctors thought I was dying and then after that my mother was diagnosed with lupus xo
Ella Cowin: Mr. Pants Saysthunderflyer on June 17th, 2012 02:35 am (UTC)
I am going to try to explain this to you the way it was explained to me by Dr. Sailles, my family rheumatologist until he retired.

Lupus is a disease of the auto immune system. It causes your own immune system to mistakenly attack your own healthy cells. It is believed that the disease is genetic, but it may be triggered by environmental factors. Some people with Lupus can have the disease for years and not know it (like my Granny), while others get very ill very young (like my baby sister.)

You are not to blame, even a tiny bit, for your mother's illness. Even if she hadn't had you, she would have eventually gotten ill. The good news is that many people with Lupus live long, productive lives (my great Gramma was 100 when she died, but not from Lupus itself. She died of a ruptured stomach ulcer caused by the medication she was on in 1992.)

Please don't blame yourself, or feel guilty about the illnesses of you and your mother. If you could have had a choice, you would have chosen differently.
takemypetals: Dolltakemypetals on June 17th, 2012 08:54 am (UTC)
I'm glad you told me that, because whenever I've heard about lupus it's usually someone dying really young which has worried me most of my life. I don't want my mother to die and leave me before she's old. Thank you, and yes I would have chosen a lot differently xo