[blueisis]

Hi, my 13 year old daughter has been asking me quite a lot over the past few days whether she can inherit sle and aps and whether it is gene related (I think some of friends have asked about this at school). I keep dodging the subject and have said that if she were to get any symptoms that the drs would be very quick to investigate in view of my very complex medical history and the great amount of time it took to diagnose me.

Has anyone else had to deal with this question from their children and if so, what did you say please?

We have a very open and loving mother/daughter relationship and she is very mature in many ways because of growing up with me being ill all the time. Of course, I hope with all my heart that she grows up fit strong and healthy without any of my medical problems, but I must admit when I was first diagnosed with sle 3 years ago, it did play on my mind too. :umm:

Your thoughts and comments would be appreciated.

Thank you in advance.

Gentle Hugs to you all

Julia x

I apologise if this has been posted in the wrong section but I couldnt make up my mind where to place this question.

 

[Katharine]

Hello there,

I had to deal with this but the other way round I was the daughter.
My Mum has dermatomyositis. She has also recently been told that she has always had lupus too and apparently fibromyalgia. She doesn't have very good follow up so she's always been rather vague on what exactly is wrong except the dermatomyositis which was extremely severe and clearly diagnosed.

When my Mum was diagnosed I was eleven and she was told that it was fatal and that death was pretty much imminent! This was all 25 years ago. As you can imagine it was not a very nice time at home. Of course the doctors were wildly wrong as My Mum is a pretty healthy 70 year old and, considering her illness, in fine form.

We were always told that it was not hereditary. Obviously there is a higher tendancy to auto-immune diseases in our family as there are now four generations of auto-immune disease (which only affects the female line), however I believe the real genetic element is very low (between 5% and 10%).

My Mum always told me that it was very unlikely to be hereditary, that there was the same chance of me developing something like that as anything else.
I never really questionned it, nor did it worry me greatly even when I started to get symptoms, I put it down to stress etc. for ages.

I really don't know what the best way is to deal with this other than I think the truth with an attitude of pretty low concern. I'd say that for the sake of other friends at school etc. the accent should be put on the unlikely hereditary element. I think that life at school is tough enough without people thinking you're about to become ill. Obviously it's not the same for doctors if she starts suffering any symptoms.

Katharine

 

[Maia]

I've always read that the chances of developing some kind of autoimmune disease are higher if a parent has lupus, about 5% of daughters may eventually develop lupus. They are also slightly more likely than the general population to develop other autoimmune disorders.

I would focus on living life to the fullest, being as healthy as possible in diet and exercise right now. And also that life with lupus or other autoimmune disease is still very precious and worthwhile. I would also be sure to say that many people are not as severely affected and live very full and productive lives... But of course ackowledging her fears is important too.

I'm not looking forward to this talk with my daughter... thanks for bringing it up. It will be interesting to hear what others suggest.

 

[CANICE]

Hi,
I have had Lupus for cloee to 30 years. My daughter now 27 years old has always complained of joint pain. She was DX with RA about two years ago.
Canice

 

[karen.w.]

Hi julia

I have the same fears as you so I do empathise,as a mother it's only natural to worry..however the fact there is only a 5% chance I think we can dare to be 'quite' optimistic & just hope that our children will be spared.

regarding talking to your daughter that's a hard one :worried: my oldest daughter,nearly 13 is also mature so I try to be more honest with her.(within reason :wink2: ) I have told her there is a very small,tiny chance but not to worry or think about it because it's very unlikely anyway..I felt I had to be honest but also optimistic.we talked a bit & she was reassured.


on the subject of school when my daughter mentioned to her friends I 'do' reiki,one girl said "that's sad my auntie died from reiki"..bless her! I would love to know what she got got it confused with!thankfully my daughter understands what it involves so didn't panic!!kids eh!

good luck to you julia,you know your daughter best & whatever you say will be with love so i'm sure it will be the right thing!
:hug:
take care..karen x

 

[cispence98]

Hi there!! I am going to get my kids tested, I think auto immune diseases do run in families, My dad has Rheumatoid Arthritis, my sister has ulcerative colitis, my other sister has thyroid disease and my neice has juvinile type 1 diabities not to mention the other relatives that have type 2 ,and of course I have SLE lupus and hypothyroid, all these are auto immune diseases so I do think the likelyhood of it being passed is definately higher for those who do have family members with auto immune diseases, I don't think that it is written in stone that they will have something BUT I do think that it is highly probable!! Hopefully by that time they will have better meds to help with the disease!!
This is of course of my own opinion but I have also read from the array of studying on the topic of lupus and auto immune diseases that it does prove to be something that is much more likely in people who have family members with some sort of auto immune disease!!
Take Care and good luck!!

 

[Lily]

Hi Julia,

I couldnt agree more with what Katharine wrote:

I really don't know what the best way is to deal with this other than I think the truth with an attitude of pretty low concern

The low concern especially in your daughters case if she is not exhibiting any symptoms of the disease and the low statistics of passing this on in most cases.

My own daughter now 20, was quite concerned at the age of 12, but I told her what she needed to know as she asked. When she was about 14 she had some signs and symptoms and was a bit more panicked about it (so were we just to put it mildly ) We took her off to the GP and she returned one low positive ANA test and my specialist suggested she go and have the full gammut of tests run and a consult with him. He diagnosed her with livedo reticularis and raynauds and apart from that couple of years where her health was mildly affected all seems to have settled down now. She knows it's a good idea to be sunsafe and mostly she adheres to that, so it's in the back of her mind but not prominent in her mind. She is confident right now she has nothing to worry about in the immediate future and should go about and live her life. This we have achieved through much discussion and the fact that her symptoms have settled of course has made a huge difference in being able to achieve that That's all we can do for now.

She may or may not have problems in the future but we have little control over that except to be aware and safe in the knowledge that if something does surface she won't face the dramas I did in getting recognition and diagosis and treatment. That puts her far ahead of my scenario thank goodness.

I think with any child tell them enough to reassure them, don't tell lies, but teach them to deal with the here and now (that goes for most aspects of life), be mindful of the future, but live in the here and now. It's a good idea to tell them that it's not being aware that causes a problem with this disease and also the fact that it varies hugely between individuals. It sounds like you had a long road to diagnosis and treatment as I did, and you were right to mention that and the difference it would make to her should she exhibit any problems. They will take more notice and be quicker to act.

Any one of the population could be run over by a truck tomorrow but it's not something we dwell on, to do that would be a wasted life.

love
Lily

 

[someonesfriend]

The one thing I would add to all the wonderful advice other people gave is, there are so many new treatments on the horizon, and who knows, maybe even cures eventually, that even in the unlikely event that she did end up with lupus, it could be a very different situation for her, as the next generation. And of course that she would have the benefit of a mom who knows what to look for and could get her diagnosed and treated way more quickly. But as others have said, thats probably not even worth getting into - just focusing on the fact that yes, there is a tiny chance, but it is tiny and its not worth dwelling on right now, that there's also a tiny chance you could be struck down by a bolt of lightning tomorrow, you can't worry about every possibility, you just have to take things as they come....

sf

 

[blueisis]

Hello to you all

A big THANK YOU for all your wonderful comments and advice; they have really helped me to discuss things with my daughter.

As I have said, thankfully she is a beautiful fit, strong and healthy girl and I am heartened to learn from you all that there is only a small chance she could inherit this dreadful illness.

Our GP is fully aware of all my conditions and as you say, will act promptly in view of my medical history.

Thank you once again!

Hugs to all

Julia x

 

[freakyschizogirl]

I was told by my GP that it is unlikely to be inherited...although my granddad had lupus...and my mum has rheumatoid arthritis.

If you are worried go and get her checked out. My sister was feeling off for a long period last year and thought she might have Lupus too...tho when she was checked she was all clear.

 

[Mysticred]

I have had lupus and RA now for 10 years and when I asked my first doctor should I be concerned about my children or grandchildren, I was told that there was no evidence in it being genetic.

Almost 2 years ago my son, 27 years old at the time was told he had RA.

Two months ago he was also found to have lupus, he is now 29 years old and a father of 2 small babies, Memphis is 3 and Keegen is 9 months old.

His doctor suggested he thought carefully about having more children.

I have a daughter and 2 other grandchildren, thank God they have not shown any signs but my daughter's little 9 year old is now being watch closely by her doctors simply because she has so many health issues to begin with.

How do you tell your children. honest and give them facts and remind them that everyday more is learned about this horrid disease, and everyday pray they do not get it.