[Elleagain]

My mom has recently been diagnosed with Lupus, we suspect that my grandmother died of lupus although it wasn't properly diagnosed 20 years ago and her cause of death was noted as renal failure. Although I have the typical symptoms of Lupus, anemia, fatigue,etc I am having trouble getting it diagnosed properly. I've had a lot blood tests done, but nobody can tell me what's wrong with me. My ex used to call me a hypochondriac.

My mom has spent years going from doctor to doctor trying to find a solution for the various things ailing her. These past few years she has had terrible sores in her mouth every winter. Now, after all these years, when it could possibly be too late, they have decided that it's Lupus.

I've read on the internet that Lupus isn't hereditary, but I think in some instances it must be. If 3 generations of women in my family have Lupus, does this mean my daughter will also have it?

 

[cath]

Hi Ella,

Welcome to the forum:welcome:

I'm sorry to hear about your mum's diagnosis and your own health problems.

The answer to your question is a bit complicated. First of all there are various types of heretitary. Some things are genetically deturnined by one gene that you inherit from one or the other parent - like whether your ear lobe is attached or loopy. Some things are inhertied genetically but you need to get one gene from both parents (like cystic fibrosis), so if both parents are carriers, 1 in 4 of their kids will have the disease statistically.
Other diseases are genetically deturmined buy several genes so that working out how they are passed on gets very complicated.

Lupus is even more complicated. From what we know (and science is not yet clear on exactly how it works), there are several genes that lead someone to having a higher chance of getting lupus, and you can inherit these from your parents. But just inheriting the genes is not enough. To get lupus there is also most likely an environmental trigger needed - things like infections or sun exposure or hormones. So someone can inhertit the risky genes, but never get sick, or someone can have the environmental risk factors and also not get sick.

In the general population about 1 in 1000 people will get lupus. If you have a parent who has lupus your chance of getting it is higher - about 5%, although the figures vary according to what you read. Interestingly the chances of having a different autoimmune disease to your parent is also higher than simple chance - as high as 10%.

So yes there is a hereditary component to lupus and other AI diseases. We don't completely understand what, and it is not the only risk factor, but it does exist.

When diagnosing lupus many of us have experienced delays and frustration while doctors took time over deciding what is is. The most important thing is havng a good rheumatologist who is at least considering the possibility that it might be lupus and is watching for signs and doing the right tests. Once they have a good suspicion that it is something autoimmune, a good doctor can also begin treatment even if they aren't 100% sure abut what to call it, as most AI diseases are treated initially anyway with the same or simmilar medications.

Hang in there and keep reading and asking questions,

X C X

 

[elisabethm]

Hi Ella.When i asked my doctor if it was hereditary he said no but since i found this site i have seen posts from others that they have it and other members of the family. Have you asked your doctor about it and see what they say hope you get answers soon Elisabeth

 

[Erskine]

Hereditary?

I have it.

My mom has it.

My aunt has it.

My brother has started to see the first signs of it...

As to ethnic preferences...I live in New Mexico. I went to a local college to do a Q and A for a friend about Lupus. When I asked the class to raise a hand if they or a relative had been diagnosed...all thirty kids raised a hand. Every single one of them. They were mostly hispanic and part or full navajo.

Hmmm...makes you wonder, huh?

 

[lilirishrose]

inherited

Ive had several specialist tell me it can be inherited, my father and all his 4 sisters have had it 2 have passed away from lupus and I have it, they say it can be genetic all our kids are getting tested too...Melissa

 

[LolaLola]

My Daughter and I both have Lupus. However, it pays to be cautious when diagnosing as Dr. D'Cruz at St. Thomas' tells me many daughters of Lupus Mothers will test positive on bloods but not ever develop the disease. So a positive test in a daughter may not be bad news. Unfortunately, my Daughter is
quite bad.
x Lola

 

[Katharine]

Hi,

I think this is not an easy one to answer, as, as Cath said it is not necessarily hereditary in the correct sense of the term.

Having said that, it clearly is pretty much so in our family as I am the fourth generation in a direct female line (though whether my great grandmother had RA or lupus is unclear). So far, none of the males in the family have had lupus (my Mum has six brothers) so, that's maybe pretty good news for me as I have two boys but will it then turn up if they have daughters...? who knows?

A family predisposition to auto-immune disorders will be taken into account by doctors and certainly helped me be taken seriously by the rheumy even if apparently only about 5% of lupus sufferers have that "genetic predisposition". So, all in all, certainly worth mentioning to doctors but I think that we have to be careful not to see things where there aren't any. It can be so easy to convince ourselves that any problems we might have are due to one thing or another and we have to keep an open mind on that.

As for your health, well, you know that something is not right and I think that you just have to keep pushing until you get some answers. Have you been to see a rheumy at all?
Hopefully if you do have an auto-immune disorder, you will be diagnosed a lot quicker than your Mum (I was) and that good treatment will make a huge difference.

Katharine

 

[halfpintfl]

Hi Ella, I am very sorry that you have this on your mind.
Lupus is not inherited, but if someone in your family has had it, then you do stand a chance of getting it sometime in your life. First, you need to get your GP to give you a referral to a good Rheumatologist, as that is who would
diagnose and treat you. More than likley getting your appt.
will be a couple of months off, so in the meantime do this:
sit down and write down your family history, then write your past and presenthealth history, including any illnesses, hospital stays, start for back in early age and bring it up to date. Also include any ex-rays or tests , and any meds that you have been on or are on now. Make a copy, leave one with the Rheumy and tell him to put it into your file and you take the other one home and keep it updated. Keep posting, we can be of more help if you tell us more about yourself. Be well.:wink2:​

 

[Elleagain]

Thank you all for your replies.

I have 3 brothers but none of them show any symptoms and seem to be in excellent health. I'm also from a very mixed racial background as is my mother and apparently this could be a contributing factor.

Once again thanks for the support.

 

[keebler]

Hi,

I have sle and my brother has sle too.

There is suppose to be an article on your question in the "Lupus Now" magazine this coming fall. A lot of genetics work has been done in the lupus area the past few years.

Welcome to the board.
Lyn

 

[chel]

heredity+trigger

I haven't read enough studies for a difinitive but last I heard there is a "some" truth to a gene being passed along but again you have to experience some major trauma, stress, sickness, etc. to begin the avalanche. fun.

I have lupus
one of my 3 sisters has lupus
my mother has fibro and several symptoms of lupus but hasn't been dx.
no one beyond that has been identified as having lupus but some similar symptoms. I think beyond my mom the others couldn't afford seeing doctors for most ailments so who knows?

Oh, and to answer your other question -- we're caucasion.

Best wishes,
chel

 

[Clare.T]

There is no one gene - many markers are implicated. There's no way I can check this out, but I would be surprised if the chances of developing lupus if it's in the family, were any greater than the chances of perfectly healthy people having a child with any sort of congenital or unanticipated hereditary condition.
At least we keep a close eye on our kids and know what to look out for so if they do start showing signs we will make sure they get checked and treated if need be and won't have to go undiagnosed for years like so many of us.
Live in hope
Clare

 

[lyn1659]

lyn1659

hi ella, i have just been diagnosed as a lupus patient yesterday. i have already told my daughters to get tested, as alot of the symtoms that i have they also suffer from and they also told me that hypermobility and athritis was not herreditory but four generations can't be wrong, can they.