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soulfly
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Discussion Starter · #1 ·
ive tried to find information on the web but im not having any luck
has anyone living with lupus that have children passed there lupus on to there children ?.....that they know of...because being just recently diagnosed
im worried about my children's future i dont want them to go through the same thing.what are the chances of that happening?
im also trying to figure out if i could ahve gotten this disease from my fathers side which i know nothing about my parents divorsed when i was young.
does lupus skip genrations or how does that work?
thanks i appreciate anyones help and feedback
 

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Hello Honeybee

I think we all share your fears, but in all probability our children will not inherit lupus and definitely not in the usual meaning of the term which is that for each child there is a definite 1 in 4, or 1 in 2 chance. Proof of this is that identical twins do not inevitably both have lupus which would be the case with true genetically inherited diseases since each twin has the same genetic makeup.
It is reckoned that the predisposition can be inherited but a trigger of some sort is needed to set the disease off. Just as siblings vary in obvious inherited features such as height, weight, and coloring, dependent on which particular mix of many genes they have, so siblings vary in their mix that might predispose them to lupus or similar connective tissue diseases, or other sorts of autoimmune diseases. There are very many genes potentially involved, not one specific one

It does tend to run in families though. It's said that about 10% of those with lupus have relatives with a related disease and there is a 1 in 10 chance that our children might in some way be affected. This is probably much the same as the chances of our children being affected by any sort of chronic disease or accidental injury or even congenital but non hereditary diseases. The main thing is to keep a general eye on their health.

Luckily there is no genetic testing available for the chances of developing lupus because there is no way of telling who will develop the disease or not. There is also no point testing unless the youngster is showing definite symptoms. Even the presence of specific antibodies is not enough to diagnose the disease : there have to be symptoms to show it is active and needs treating.

Here's a good article about it
http://www.uklupus.co.uk/genetics.html

Make a point in life of not worrying until there really is something to worry about! You have enough to cope with as it is.

All the best :)

Clare
 

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Honeybee:

No one in my family on either side, back for at least 3 generations have ever had an autoimmune disease...yet here I am!

Genetics are complicated and as clare said, don't worry until you have a reason to.

Stephanie
 

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I fall into the familial genetic group. It skipped my father's generation, but has hit all 3 of us first cousins. My cousin died, at age 36 yrs, of complications from diabetes and lupus, I was the first diagnosed, and we have the next first cousin who has tested 3 of the 11 sle symptoms. BUT, all of us are ana negative and have always been negative. The cousin who died, had her life ended by her 10th heart attack, she also had major brain involvement with seizures starting at 13 yrs. It has done major damage to my lungs and some brain involvement. The other cousin has joint involvement and mild brain involvement.

Of our grandfather's 8 siblings and himself, 8 of the 9 died of either heart attack or strokes. The 9th died in her late 90's of basically worn out body. The oldest sibling died in her early 20's of "heart problems." Nothing more was known about her. My grandfather was about 9 when she died, so he didn't know much. By the time we knew about sle, the other relatives who might have known, had already passed on. Both my uncles (father's brothers) had heart attacks and my dad had a thoracic aortic aneurysm which was repaired with an endo-luminal graft.

So, yes it can run in families, and somewhat skip generations.

That said, I would NOT put out much energy worrying about the possibilities of sle passing on to your children. Keep aware of symptoms like rashes and fevers in the summer where the kids had been in sun for the previous day or two. If they have a bright face rash, joint involvement, organ involvement, etc, THEN I would be at the doctor wanting to know what to do. Even if the ana was neg, I would be looking into it further. IMHO too much weight is put on ana's. They are but ONE of eleven symptoms.

In my case and my cousin, had the doctors pursued more thoroughly beyone the ana, we would most likely have been diagnosed about 25 years earlier for me, and about 20 for my cousin. We had a long list of symptoms, but because our ana's were negative, the drs did not pursue any further investigation.

I suggest you keep an eye on your children and if there are symptoms, then get them checked out by a pediatric rheumatologist.
Sally
 

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good morning :).
in my case i know it comes from my granmothers side she had rhumertoid arthritis and i suspect lupus.
i have passed it on to my daughter and my other 2 girls both have symptons of lupus they wont be tested as they dont want to know.
they are 19 and 24 years both have had the forms for the tests to be carried out and both decieded to throw the forms away. one is sun sensertive and she still goes on sunbeds, but has stopped this 4 weeks i kept telling her off and she kept feeling ill. they said they want a normal life and they dont care if they have lupus. they watched as there sister had to give up her career and they dont want to be like her. also it seems that danii lupus started with a first pregnacy? so neither the other two want children. i felt incredible guilt at first but it was not my fault just like it was not my nans fault for me having it. also my son is ok no signs at all.
hugs nic
 

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Hi :)

this is something I have worried about too as I have 2 daughters..I was told ( as Clare said ) that my children have a 1 in 10 chance of developing lupus..my eldest daughter had a lupus scare last year but thankfully she was fine..I agree with the others that we should try not to worry about it and hope for the best :) I don't want my children worrying they will get either.

regarding families I have lupus & RA overlap, my sister has APS and my mother has coeliac disease..my grandfather on my mums side died in his 40's from a stroke, then heart attack so he could possibly have had either lupus or APS..my grandfather on my fathers side had arthritis but I dont know much about that side of the family.

personaly I would try not to worry, I know this is difficult :sad: but on the other hand if you ever had any worried then I would get them checked out.

take care
karen x
 

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Hi Honeybee,

I know as mothers we want to spare our children heartache and pain. :hug: We tend to worry more about them when we are ill ourselves.

I have found to take it one day at a time. Hopefully never ever have to cross that bridge of having our children get sick with lupus or any other illness.

Take care of yourself and enjoy your children. They grow up way to fast.

love,
Lyn
 

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soulfly
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Discussion Starter · #9 ·
im so sorry to hear about everyone story's

yes it is true we do tend to worry about our children more than ourselves.
my youngest daughter is the one that worrys me

ive noticed this summer that whenever she is in the sun she gets a rash on her face and arms

she also develpoed a 102 fever on her 2nd birthday after being in the sun all day
the next day she was fine

im trying not to worry but its hard..i want my children to live long healthy lives!!!!! i know we all do
im sorry that you guys have to deal with this disease and other diseases
we need to fight for a cure!!!
 

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I was formerly on here as Gymcoach10- haven't been on in quite a while and had to create a new user name- I was diagnosed in 2004 with SLE/Raynauds/Fibro.

In answer to your question, my mother was diagnosed by a biopsy in 2007 with SLE.

My 16 year old daughter has many symptoms- joints, sun reaction, and was just tested. She is ANA Positive, so I suppose she will have to have some further testing to verify. Her sypmtoms are identical to what I experienced at her age.

So I don't know if there is justifiable proof of it being passed down, but there are now three generations in my family- my mother, myself and my daughter.
 
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