Anyone been told they 'tested positive as a carrier for Lupus'

[Lorska1]

My little sister was asked at her Rheumy appointment if she was having any more children and when she said no the consultant told her that it was probably a good thing because she 'tested positive as a carrier for lupus'. Have any of you every been told that? And does anyone know exactly what they mean? Thank you xx

[Mocking]

Hey

That’s really interesting because my daughter is 23 and has lupus like symptoms and has been told like I have that it’s not hireditry !!

Can anyone help on this please

[RhondaB in reply to Mocking]

It is heridatery. I know of a mother and daughter both with lupus. When I was diagnosed in 2007 I was told it wasnt. Then thru research found it was. Had my daughter tested and she's good. Also had a cerebral aneurysm in 2001. I had a headache every day for nearly 3 months, thought it was stress, had just lost my mother. After dinging out i had lupus ask if it was related to my aneurysm and was told no, but lupus does affect the nervous system and blood flow. I found and excellent Dr a gp who is very knowledgeable of lupus. You must do your own research for u found that there are very few gp, even in the emergency room that knows next to nothing about it.

[whisperit]

There is no simple test to determine how likely you are to have children who have lupus, and the notion that you can be a "carrier" of lupus is wrong.

According to the LupusUK leaflet,

"there is no single gene which puts people at risk of developing lupus (unlike haemophilia and cystic fibrosis). It seems most likely that between 20 and 80 genes contribute to the risk of lupus and that the genes set the scene and environmental factors contribute to whether or not the disease develops and when. The “environmental” factors include exposure to UV light (sun-exposure), various infections, possibly chemicals in the environment, factors related to stress (not well-identified) and female hormonal activity (for example the oestrogen-containing contraceptive pill or pregnancy). These factors combine together to influence the immune system in such a way that immune abnormalities that cause the disease to develop"

So if you have lupus, it is likely that you have quite a few of the genes that make you more vulnerable to developing a auto-immune disease. Since you will probably pass on some of these genes to your children, the chances that your children may develop an AI disease is slightly higher than if you do not. But even if they do inherit some of these genes, they may not inherit enough of them to be at significantly increased risk, and/or they might never be exposed to the environmental triggers.

My opinion is that telling someone they are a "carrier" of lupus is highly misleading and unhelpful.

The leaflet is here lupusuk.org.uk/wp-content/u...

[Lorska1 in reply to whisperit]

Thank you for the info Whisperit! I thought that too, but was worried there had been some development I was unaware of. I'll be calling my sister later today to reassure her xx

[Bebe76 in reply to Lorska1]

Great answer from whisperit. Rather unbelievable that her consultant is giving out misinformation tp patients and (it seems) trying to discourage her from having more children just because she has lupus, based on this false information!

[johare]

I totally agree with Whisperit. I have asked this question many times of my doctors as I have children and grandchildren. I want them to be aware of symptoms that I was not. There are many things that we genetically hand to our children and along with my brains and beauty I am sure that they have some of my auto immune qualities however I have been told that there is no single test.

[Paul_Howard Partner LUPUS UK]

Hi Lorska1 ,

As other members of this community have suggested, it is very surprising to hear that a rheumatologist has suggested your sister is a 'carrier' for lupus. Lupus is not a hereditary disease in the same way as cystic fibrosis or sickle cell anemia which are inherited as a single gene. Lupus develops due to a genetic predisposition (involving many different genes) and environmental triggers. Genetic traits alone do not suggest that someone will necessarily develop lupus - studies of identical twins have shown that in only around 25% of cases will a sibling develop lupus if their twin also has it. In addition, a child will only inherit half of their genes from one parent.

Do you know whether your sister has had some form of genetic screening or whether this was based on blood test results?