I am in total shock!!! Did not know That lupis is genetic.

[Shireenm]

My son of 27 came to me and told me That he has shingels, :e also SAID That he think That he also have lupus, I SAID to him That he does not have to worry beacause my Dr. SAID it is not genetic. I was in shock when I read That it is genetic, I am haert broken, just to think my son could have it and it is me who gave it to him. I dont want him to suffer like me. I havent told him yet, I think I am going to wait and see how his wealth is going on, I just wish the world out There can just know about lupus and get a cure, also just want to say thank you for all the people That is here That listens and understand what we going through, lovies yoy all and God bless . Xxxx

[Shireenm]

Sorry I meant his health lol

[Djsmall]

There is nothing proving it is genetic. There is so much false information out there. When I was 1st diagnosed I was driving my dr crazy. He told me there are only 2 places I want you read , johnhopkins.com & moffitcenter.com.example: I read that lupus was a prelude to cancer and was scared beyond belief . Simply isn't true. No one in my family has lupus. I am a white male, rare but unfortunately tests results show positive ANA. Like he said even the more reputable sites have wrong information. " David don't believe everything you read " especially on the Internet. Gonna pass that onto you as well.

Ask your doctor, I can see how this would scare you. My kids, have had symptoms. Been tested, because of my paranoia and its just coinsedende.

Take care

David

Tampa Florida

[Hidden]

Hi, look to Lupus Uk for information too. A lot of us are concerned for our children but from what I've read though you might pass on the gene/s it has to be triggered by something " environmental factors, infectious agents, lupus-inducing drugs, excessive ultraviolet light, physical trauma, emotional stress or other factors." Daniel Wallace MD, The Lupus Book, 3rd edition.

Research into identical twins has shown that one can have lupus and the other not which proves it's more than just genetic. Don't beat yourself up about it, who gave you your genes? :-)

[Shireenm in reply to Hidden]

Hi, thanks for the advise, what do you Mean, I got more of my Moms genes, I look like her, we the same, my Mom died of alziemers years ago and my suster has MS. I dont want to stir things with my son. Will just leave it and see what happens. Thanks for your support, I really need it. Xxxx

[Hidden in reply to Shireenm]

Sorry I meant -. don't blame yourself as you got your genes from your parents they got theirs from their parents, and it goes on. Xx

[lauraa11en]

Hi I just wanted to put my understanding out there. My understanding from research is that the the auto immune condition is genetic which as already pointed out has to be triggered, but it is the mutation of the gene that determines the disease. In my case, the genetic factor is my mum had diabetes, which is autoimmune. Many easier to live with conditions are actually auto immune.

[margareth8537]

ShireenM

As has been said, don't beat yourself up over giving your son this. IT IS NOT YOUR FAULT!!!

Lupus is bad enough without a guilt trip.

Read what you can. Make sure that he does get all the tests available. And hope.

Even if he does have it, he may have it in a form that causes little trouble. This forum is great, but remember that most of us are on here because other people don't understand Lupus, and some of us are pretty sick, and sick of not being well.

I have just had 12 months when I have felt fine. In the past I have gone for years with very few symtoms, and I didn't develope Lupus until I was in my 40s. Since then I have found several relatives who have now had a similar diagnosis, but it has had to be triggered.

All the best to both of you

Margaret

[Melinda]

Lupus does have a genetic link, but very few diseases are strictly genetic or hereditary. When my sister became ill with Lupus, her children were very worried that they might get it. I somehow knew that if any of us got it, it would be me, as we both had the same parents. Sure enough, I was the one that got it. I also have an uncle with Lupus but his is very different to mine.

Autoimmune diseases can run in families, my mother had RA. She though came from a very large family and it was only her and her brother who had autoimmune disease. I also have two siblings who didn't get Lupus. Don't blame yourself, as we all have a genetic susceptibility to getting something.

[fishers63]

I have it, my mum had it, my brother has it, that's genetic!

[Purpletop]

Don't confuse hereditary (I.e. from your parents/family) with genetic (I.e. your unique genetic make). Lupus has been found in people having a particular combination of genes, so yes, it is genetic. But whether the parents of those sufferers carry the same combination of genes, it is not yet proven - some do, some don't, so on that basis lupus is not hereditary.

[Hidden in reply to Purpletop]

Interesting. I thought all our genes were inherited from our parent's gene pool. Do new genes mutate so to speak from a combination of their DNA. If you view genes as ingredients, where did ours come from to create our lupus cake. Though if our bodies didn't modify we wouldn't have evolution. A complicated subject

[wood]

Hi

Please dont worry or blame yourself lupus is a pig and is not proved to be genetic Im the only one in my family to have it and we dont know that it is genetic I was asking my Dr about this the other day and he said it,s not proven one way or the other but he didnt think it is genetic .

we worry about our familys and blame ourselfes your a mother and of course you worry but read the lupus book and put your mind at rest my community has helped me to laugh and love and rest they push tell me and if needed bully in right way so that I look after me .

Gest of God Bless Judithx

[Paul_Howard Partner LUPUS UK]

Lupus is not hereditary but it does have a genetic component.The following is from 'The Lupus Book' by Daniel Wallace M.D,

"If you have lupus, members of your immediate family, or first degree relatives, are at a slightly increased risk for developing it too. Several surveys have estimated this risk at 10 percent for your daughter and 2 percent for your son."

[Lulabelle]

Lupus is not Genetic!

My daughter who is now 12yrs old and is going through puberty had to see a Rheum Dr 2 weeks ago for the commencement of checks.

I have Lupus SLE diagnosed in Oct 2010 ( but I have had I believe since 16yrs old).

I also have antiphospolipid antibodies, protein s deficiency, reactive arthiritis and Sjogrens Syndrome.

The Rhemu Consultant advised that Lupus is not passed from parent to child and is not genetic.

But family history has to be taken into account. My father and grandmother had severe Rhemutoid Arthritis and on my mother's side of the family the suffered with Thromboilia.

Therefore two genes from my parent's could of caused my Lupus! which they think is hormonal based in me.

It is very highly unlikely that my daughter will inherit Lupus, but they cannot role out the above auto immune disorders which they are currently investigating.

Hope this helps and provides you with some peace of mind.

Lulabelle x

[ebril]

I feel the same I have SLE and so do two of my children my youngest daughter was diagnosed first then I went to see a rheumy only for my knees but she diagnosed me straight away and then last year my oldest daughter was diagnosed with lupus too I felt so guilty that I've passed this on to them I also found out later that my cousin has had it for years which was a shock as I didn't know I knew she was ill but not what with. Now we all support each other and know what each of us are going through my sons in law call us the Lupie family my only worry now is that none of my grandchildren get it or that my other two children never get diagnosed with it but you do have good support because you know what each other is going through

[Shireenm in reply to ebril]

Thanks so much, maybe If I dig further into our families history I will find out That somebody has it to, thanks for the advise, God bless xxxx

[Britchick42]

Don't blame yourself, as my doc said to me it's not like you were a drunk or drug addict ! Whilst some people say its not genetic pur say it does tend to run in famillies. Your children may be more susceptible to the triggers that's kick start it . Both my younger 2 have developed auto immune disease not exactly the same as myself but never the less those who specialise in it take it much more seriously when a patent has it. I hope for his sake heroes not, but he will learn to cope and survive just like you have. He has a good teacher . Try not to blame yourself xxx

[gazorpf]

Lupus is not hereditary. If you have a first degree relative with an autoimmune disease you have a 5-10% more likely chance of developing some autoimmune disease.

Lupus requires just the right combination of genes PLUS triggers. There are studies of genetically identical twins where one develops lupus and the other does not. In fact, I have a twin in my support group. She has lupus. Her twin does not.

It's time to get off the hysterical guilt trip. Did you knowingly decide to have a child and give that child lupus? Of course not! Life is hard, People get sick. We do the best we can.

What I can tell you is that if you dwell on this, if you ruminate on this, you will make your lupus worse. If you make your lupus worse, you are more likely to be a burden on your family. Is this what you want? I doubt it.

What we think causes what we feel. What we feel causes chemical and immunological changes in our bodies. Those changes affect health. Time to change your thinking. Time to leave the pity party. It is what it is. Blaming yourself does not change what is but does affect the future and your health.

[Melinda]

There is a difference between a disease that is hereditary and a disease that has a genetic link. One of my brother-in-laws is a haemophiliac, which is hereditary. As someone has said, whether or not you get lupus, comes down to genetic combinations and triggers. I remember Dr Robert Winston saying, very few diseases are inherited.

[scoobydoo1]

unfortunately some of us have a predisposition to autoimmune problems, however I strongly believe that it is the trigger factors that we need to identify more. I am awaiting official diagnosis, my brother has M.S, my mum has R.A and dad had diabetes and R.A, then ultimately non hodgkins lymphoma, looking at it like that I may as well give up now....

never be sorry for things that you ultimately cant do anything about, love your children and just be there for them

[diane1428 in reply to scoobydoo1]

Brilliant. I agree with you fully. Let the docs do the worrying let us get on with the living.

[Silvermyst]

Please don't feel that this is your fault, it certainly is not. My understanding and experience is similar to that described by Scooby, I had a genetic predisposition to an autoimmune illness due to the fact that my fathers family line has a high percentage of immune system illnesses, however, my parents did not give me 'Lupus'. It could very easily have skipped a generation and bypassed myself, but it didn't.

I don't blame my parents for anything because there is nothing to blame them for. Love your kids, explain the situation as it is and please send me a personal message if you would like to chat in more detail xx

[katerowley]

Well both me and my sister have auto immune disease, the doctors have know admitted that's its genetic ( my sister got it first and they said it was from a virus) unfortunately my mother died before she could be tested. But I remember some of the symptoms I have she had.

[gazorpf]

Lupus is NOT directly inherited like sickle cell anemia is inherited. People may have a genetic predisposition to develop lupus and never develop the disease. In studies of genetically identical twins, both develop lupus ONLY 24 PER CENT of the time. Environmental factors and stress play into triggering those genes to express themselves.

Your son has about a 5% greater chance of developing lupus than the general population. You did not give him lupus. There is absolutely no need to have this discussion with your son and cause him needless worry. If he exhibits symptoms over time, then have the talk. Otherwise, let him enjoy his health and life.

[diane1428]

I must admit it is a shock that doctors are now saying it is genetic after denying it for so many years. In my family I have rheumatoid artheritis, multiple sclerosis, depression and when I had asked if I had auto immune years ago I was told don't be silly its too rare a condition. Now they have found out I have not only SLE but anti phospholipid syndrome. It took me 3 months to pronounce that one.

I now fully believe my daughter has APS but of course the doctors are hedging their bets.

I think the medical profession shouldn't be so afraid of it and tackle it forcefully.

Its lovely that this forum is here - ive only just found it and its a god send.

I may be mad but I feel now im not the only one.

[Travis1]

I understand. I was diagnosed about 20 years ago. My mother had Discord Lupus and I have Systemic. I also have Sjorgune's Disease. The doctors tried to figure out how I had Sle. Now the arthritis is getting bad but I won't complain. I'll just take Tylenol and live with it. I'm blessed to be alive. I have a testimony to tell about the Sle but, again I'll just say, " I'm blessed to be alive".

DeNese L.

[Rubylu]

We inherit genes from both parents equally, regardless of which one you look most like. And yes, you may have acquired a genetic predisposition towards autoimmune disease within a specific sequence of some of those genes, but there is good evidence (look at google scholar and type in epigenetics and lupus for research papers -go to academic sources for your information, not media) that epigenetics (the influence of the environment on the expression of a gene that may cause mutations to that gene, which can then express disease processes such as lupus etc) is why some people develop specific autoimmune diseases. So in any one family there may be the predisposition to develop disease because of shared genetic traits, but some will never develop disease and some might, but it could be anything on the autoimmune spectrum, so one may get diabetes, another MS, another RA or Lupus and so on.

Probably most people have this predisposition but do not get exposed to the traumas, stresses, viruses, injuries, dietary insults etc... that trigger the required epigenetic changes that will cause their cells to behave in a way to exhibit disease.

You are right to leave things as they are, or point your son towards expert sources of information so he can come to terms with his diagnosis. You may find this helps you find peace of mind too. It's not your fault, it's plain bad luck!

Take care.