[mysharonna]

Hi,

In reading through so many old posts, Im amazed to see how many mothers with lupus also have children with lupus or related problems. All the doctors and research have told my husband and I that it is not genetic. However just based on the sampling on this forum, Im finding that hard to be true.

No one in my family had lupus, although there are other auto immune disorders not as serious on my mothers side.

With my second little one on the way, I cant help but feel guilty that I may be setting my children up for a lifetime of doctors and pain. I feel selfish for having children.

So, just curious to know the actual numbers...how many of you with lupus have a child with lupus as well? How old were they before you knew something was wrong?

Thanks for your input,
Sharon

 

[Clare.T]

Hello Sharon

I think it is more healthy to look at the statistics, bearing in mind that this forum is in no way representative of the entirety of those with lupus.
The statistics vary but highest I have seen is 1 in 10. The really useful statistics would be how many children are born with health problems of any sort or turn out as they grow to have health issues, to perfectly healthy parents. It wouldn't surprise me if that was even higher.

The difference is that healthy parents don't usually think of what might go wrong when they start their families. They put all thoughts out of their mind of what can go terribly wrong in healthy childbirth and they never think of the endless problems of child rearing. I should think the human race would die out soon if we did consider all this and factored in things like climate change and all the rest.

Guilt is an inevitable component of responsible, loving parenting. I do understand that it is slightly different when you know you have a chronic disease but those feelings need to be put into a broad perspective.
I realised ages ago that if I let myself succumb to guilt for the problems my kids have, it wouldn't do me or them any good at all.

Did you get any guilt from your parents for your lupus and do you ever blame them for your lupus. It isn't genetic in the strict sense of the word with known odds for each conception but there is definitely a genetic predisposition. Something needs to trigger the lupus in the individual. - not even both identical twins develop lupus although as might be expected it is much higher than for separate siblings, about 75% I believe.

I think you are probably very low right now after that terrible experience with your rheumy and maybe you are worried about test results ?
I hope all is well and you will soon regain your usual confidence and optimism.

Keep the faith

Many hugs

Clare

 

[peonyprincess]

I have a daughter that has Lupus and of course, so do I. Do I think that it is genetic, no I don't. I have three other children that do not have anything, at least at this point. My mother doesn't have any health issues at all, nor does my father. So where did mine and my daughters auto immune disease come from, good question, luck of the draw I suppose. You cannot worry about the what if's. We all take one day at a time and that is all we can do. Please try not to worry about the unknown and things that you cannot control. Enjoy your family and the one that you are about to be blessed with and your other child and husband. Enjoy them and love them to pieces. There are too many days that Lupus steals froms us, don't let it steal these precious moments from you.



Nancy

 

[mysharonna]

You are both right. I guess I have been a little down lately and focusing more on the negative aspects of life rather than the positive.

My 2 year old just got over a terrible flu, and it just broke my heart to see him so sick...and I gather my hormones just got the best of me worrying about the what if....I just dont want to be the cause of any pain or illness.

Thanks for the pep talk ladies, I needed it!
Sharon

 

[samour]

Hi Sharon,

Good advice from others. I have crohns and thrombotic thrombo-cytopenia purpura a clotting disorder 5 times, plus a positive ANA and Lupus like symptoms, was diagnosed with Fibromyalgia years ago. My daughter has Lupus CNS that is affecting her brain, joints etc. I asked her Rheumy did she get this from me? His answer was she got the good in you and the bad? not sure if that was a answer. My Aunt on my Moms side has Ethlos Danros a connective tissue disease, my Aunt on my Dad side had M.S. Who knows what past generations had as diseases were not always known back then. Genetic or fluk? I really don't know if any one really has all the answers.

Sharon

 

[Katharine]

Hi there,

My kids don't have lupus. I have two boys. Apparently the "genetic" effect is relatively rare with lupus though it is definitely there to some extent.

I have lupus myself, My Mum has dermatomyositis and lupus, her Mum apparently had lupus and her grandma RA - I'm not 100% sure of the RA as it was obviously a good number of years ago - My Mum is now going on 70

So it seems there is a connection in the female line. It has never touched the males in the family; Mum had 6 brothers.

Although I know the genetic element is there it is not something that would overly worry me even if I did have girls. There are so many things that could happen to them, that they could have, I feel that lupus is just one of them, a possibility - no more!

that's just my take,
Katharine

 

[Maia]

If I'm remembering correctly, it's about a 1% chance or less that your son will get lupus with one parent having lupus. For daughters the risk is thought to be about 5%. So the risk of passing on lupus specifically is low, although it is increased compared to the general population.

I think there is probably a combination of genetics and environment/infectious process that is behind the development of lupus in any individual person.

 

[LolaLola]

Yes I have Lupus and APS,so does my 16 year old. She is much worse than I was at her age. However, at least she has benefitted by having a Mum who understands!
x Lola

PS Please do not worry, I know the risks of children developing it are not very high. We were just unlucky.