Interested in finding out about how hereditary Lu... - LUPUS UK


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Interested in finding out about how hereditary Lupus is

Perun1 profile image
11 Replies

Hello, sorry if I sound ignorant on this subject, but I don’t know where to ask. My ex husband has Lupus and I wanted to know what the chances are that our daughters could also have the condition?

11 Replies
Suvi8901 profile image


You may find this helpful from the LUPUS FOUNDATION OF AMERICA:

Bessy01 profile image

Hi I have Lupus diagnosed in 2010 my daughter has it also diagnosed 2019 she is 38. My son was tested he is 42 but was clear. My Dad has a autoimmune disease so who knows if it is hereditary.

Hamptons profile image
Hamptons in reply to Bessy01

My first cousin has it, my sister and brother have other autoimmune issues. As did my mother. I had always understood there is a familial link.

Whippet_lady profile image

Hi Perun,

I was told by my GP, rheumy and by Paul on here that it isn't hereditary but maybe I used the wrong word because there do appear to be grandparents/parents/children who have it and for a condition that, itself, is rare that seems quite some coincidence if there is no link. I don't know how common it is, maybe we just get to hear about them and they're 1 in a million or something, I've no idea, but I am also concerned about my kids and pick up on every little symptom they might have (which usually ends up being a cold or a hangover


I wish I could guide you to something definitive, sorry.

Take care.

LottieLou96 profile image

There are genetic predispositions that can be passed down generations, but as well they don't necessarily have to be, sporadic mutations can also occur, but penetrance if any genes vary among individuals, they can be turned off and on, be aggravated by drugs, hormones, medication, environment, stress etc. But largely there are many many genetic changes that all influence a person's risk of getting an AI. It is possible, very rarely, to have a monogenetic (1 gene that can activate lupus) very, very rare. But even penetrance varies, and whether the gene is active or not matters. It's never that simple, but you often see a variance of AI disease in certain families. Myself, initially diagnosed as a kid with familial systemic CLE from TREX1 mutation - albeit I'm not convinced, but penetrance is varied greatly. I am an identical twin, and despite my sister having some mild Raynaud's and chillblains she does not have lupus.

That's my understanding, but I wouldn't want anyone to live in fear that their children would become ill and unwell due to genetics. There is plenty more at play and you can never determine that. You just have to enjoy the present and not fear for their futures.

Stay safe, many blessings


Perun1 profile image

Thank you all xxx

NewEngland3 profile image

some things that can decr risk- optimal vit d level, recent study that omega 3 can cut AI risk by 30 percent, rec more plant based diet, some studies suggest staying out of the sun helps, and if possible use hormone free birth control. risk if one parent has it is 1-5percent in offspring. and I personally think yo yo dieting increases risk--if possible have your daughter have normal BMI with minimal weight fluctuations. do NOT smoke cigs(proven risk factor for some AI) and avoid all drugs

Perun1 profile image
Perun1 in reply to NewEngland3

Thank you, all good to know. It’s the girls father who has lupus SLE. Who knows what triggered it when he was 42? Always previously very fit and healthy. Very poorly now, with so many complications.

Treetop33 profile image

Hi there. I have lupus and APS. My aunt had the same. My sister also has an autoimmune condition, and I've always suspected my mother to have something, though she was never diagnosed unfortunately. I'm being careful with my daughter so she might be able to avoid some of the triggers.

Perun1 profile image
Perun1 in reply to Treetop33

Thank you, I suppose there’s a part of me hoping it’s just passed down the female side of the family. There’s no benefit to me worrying really. Knowing triggers will be a help though.

tree_shadow profile image

I believe there are cases with identical twins in which only one twin ended up with lupus. Not sure, think I read about that in the big yellow lupus book.

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