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Old 06-02-2008, 08:13 AM   #1
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Hereditory Link To Lupus ???

I have a very important question, and would be really gratefull if anyone could help me here.
My sister had Erythema Nodosum when she was 15, and was extremly ill for a number of months. My Grandmother had rheumatic fever twice. I am now being investigated again for Lupus, could anyone tell me if there is any hereditory link in getting Lupus or any link with the Erythema Nodosum and/or Rheumatic fever. Thanks guys....

 
Old 06-03-2008, 09:27 AM   #2
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Re: Hereditory Link To Lupus ???

I will share with you what my rheumy has shared with me ( she is a Lupus researcher), I do not make any attempts to be a specialist just thought I'd share.
Here goes.
After years of dr.'s telling me I couldn't have Lupus because of NO familial history, I find out later (from rheumy)that this is old school thought.
For years it was thought that Lupus was family line only, what they have found through research is that it CAN be. But it is NOT always the case, because they have found that it can be triggered by a severe infection, trauma,etc. and many other ways as well as "just showing" up. With your familial history it probably would be a good idea to stay on top of your health and any symptoms, also let dr.'s know of fanily history as well as your own.
Just because things that are a part of Lupus (& other autoimmune diseases) have occured in your family does NOT mean that you will develop it. But it is something that you should be aware of.
Since you are being investigated for Lupus it sounds as if you may have some symptoms for it. Please know that all Lupies are in this together and we are here for one another always. And believe me there are so many people here that know so much that help is never far away. And remember we have lived the part of Lupus and not just read about it in a book (like dr.s).
I hope that this has helped some.

Good luck,
Alyson

Last edited by ACOhio; 06-03-2008 at 09:29 AM. Reason: spelling errors

 
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Old 07-03-2008, 07:58 AM   #3
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Re: Hereditory Link To Lupus ???

Quote:
Originally Posted by topsy123 View Post
I have a very important question, and would be really gratefull if anyone could help me here.
My sister had Erythema Nodosum when she was 15, and was extremly ill for a number of months. My Grandmother had rheumatic fever twice. I am now being investigated again for Lupus, could anyone tell me if there is any hereditory link in getting Lupus or any link with the Erythema Nodosum and/or Rheumatic fever. Thanks guys....
I'm new here and I'm jumping in to let you know of my experience with this. A grandmother on my father's side had Hashimoto's Thyroid. My grandfather had osteoporosis. My grandmother on my mother's side had RA, another had diabetes.
I have lupus, Hashimoto's thyroid, osteoporosis and many more autoimmune diseases and disorders. I have a brother with autoimmune diseases. My youngest daughter, 33, has lupus and Hashimoto's.
Now, is this inherited? There hasn't been enough research done to give honest answers. All anyone can do is say, "possibly." What kind of answer is that to someone like me who can prove it's in the "family?"
I hate the fact knowing that I passed my health to my daughter. I wasn't diagnosed with lupus or any health issues until my children were older.
I do know for a fact that stress brought the lupus symtoms out. I was living a very stressful life at the time. Would lupus have ever come out? I don't know. Lupus is a horrible disease that no one but a lupie can understand. We're in it together. Through the muddled waters we travel, only we can understand how you traveled through those waters to get where you are today.

 
Old 07-03-2008, 01:02 PM   #4
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Re: Hereditory Link To Lupus ???

Topsy123, I'm sorry you are ill I too, am just a patient, and this is only my opinion based on personal experience, and some reading.
My Dr. told me shortly after diagnosis that certain "tissue types" are more susceptible to Lupus than others, and that children of parents with Lupus have a slightly higher chance of getting Lupus. I have an aunt who had type 1 diabetes (auto-immune), my dad had gout, and previously, had rheumatic fever, my mom has thyroid trouble, several relatives with RA etc. So, in my opinion, heredity plays a part in making you susceptible to Lupus, and then maybe something like Mono-epstein barr virus, stress, rheumatic fever, fifth disease etc. pushes you over the edge. No matter how you get it, once you have it, you have it I hope you don't, and that it turns out to be something simple and curable.

 
Old 07-07-2008, 08:28 AM   #5
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Smile Re: Hereditory Link To Lupus ???

Hiya,

Just to say there is absolutely no lupus at all in any part of my family, going back years and years. So I think this is a subject that can and always will be open to discussion until a definite 'yes' or 'no' is given through research..

It is sometimes said in various papers that people might inherit something from their parents that predisposes them to develop lupus. Thing to remember though is states that they are not pre-destined to develop lupus, but they may be more susceptible. Also it is said in various papers that relatives of lupus patients have an approximate 5-12% greater tendency to get the disease if family members have it.

This though is all 'might be' or 'could be' and there is no definite link that has been proven at the moment. I am writing this not from a professional viewpoint just from reading lots of information about SLE, which I have had for 30+ years.

Hope this helps in some way. I do hope you can get answers to your questions that help. Take care.

goldenwings
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Last edited by goldenwings; 07-07-2008 at 08:30 AM.

 
Old 07-07-2008, 02:30 PM   #6
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Re: Hereditory Link To Lupus ???

HI, Thanks guys for all your replies. I havent found concrete evidence to suggest a link with the Erythema Nodosum, or Rheumatic fever but I do think there is a link somewhere.
I am going to the London Lupus Clinic on Friday for a private consultation, im hoping to get some advice and help, even if it means no I don't have it, and therefore I will be able to move on.
Incidentally, my mother has thyroid problems and her mother before her, so again I am not sure if I should mention this to the consultant aswell when I see him.
I am not looking to have Lupus, but after being so ill for so long I AM searching for answers, so that when I do get flares from time to time, I may be able to get help or medication to help me through.
I am very low with all of this, I have lost ALOT of weight through gastric problems, chest infections, my stomach becomes SO inflammed, my gums are extremely swollen when this all flares up, my joints ache, ie, my wrists, my knees, my eyes get inflammed and red, I have to take drops for that. I get bad bruising on my arms if I do to much manual work, got a rash that comes and goes on my neck, my forefing and thumb are so tender at times I can't even lift the kettle. I could sleep for a whole year and still feel tired, I get BAD headaches, nausea, vomiting, all this when I get a flare and then it goes. As in it calms down and I am able to function again, but it leaves me so very physically weak. My blood test for Lupus came back borderline, not sure what that means. I get wore before my menstrual cycle and the pain in my back is terrible at times. I get chest pain, not all the time but when it happens fells like a dam heart attack, urinary infections aqnd my memory is pathetic. I could go on but it just sounds like a hypocondriac and believe me thats the last thing I am. I would sell my soul to feel well and not frightened by these flares or episodes. Anyway thanks again guys...appreciate the help and info..

 
Old 07-08-2008, 07:11 AM   #7
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Re: Hereditory Link To Lupus ???

Quote:
Originally Posted by goldenwings View Post
Hiya,

Just to say there is absolutely no lupus at all in any part of my family, going back years and years. So I think this is a subject that can and always will be open to discussion until a definite 'yes' or 'no' is given through research..

It is sometimes said in various papers that people might inherit something from their parents that predisposes them to develop lupus. Thing to remember though is states that they are not pre-destined to develop lupus, but they may be more susceptible. Also it is said in various papers that relatives of lupus patients have an approximate 5-12% greater tendency to get the disease if family members have it.

This though is all 'might be' or 'could be' and there is no definite link that has been proven at the moment. I am writing this not from a professional viewpoint just from reading lots of information about SLE, which I have had for 30+ years.

Hope this helps in some way. I do hope you can get answers to your questions that help. Take care.

goldenwings

Goldenwings, I can also say that there is no history of lupus in my family on either side, going back as far as anyone can remember. There is however, autoimmune diseases and disorders. I had three daughters and only my youngest has lupus. What are the odds with us? We are the only two to have lupus from a very large family, tracing back 6 generations.
I'm aware there is no definite link but I do believe autoimmune diseases seem to pass from one family member to another. I don't know if lupus would have ever roared it's ugly head in my body if I hadn't lived through a very stressful year. No one knows the answer.

 
Old 07-08-2008, 09:55 AM   #8
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Smile Re: Hereditory Link To Lupus ???

Hiya Polly,

I so agree with what you are saying. This is why I said the bit about having maybe more of a chance of having lupus through inheriting something from parents, but this doesn't mean they are definitely pre-destined to have lupus.

I tried to do a quote hee hee but don't know how to do it.

I can't speak medically. I can only give information here that I have gleaned over the many, many years that I have had SLE.

As I stated previously until it is given a 'yes' or 'no' we are all in limbo I think and hopefully one day we will all get the information we have been waiting for. Then this will lead on to better and better treatments and medications - if not for us then for the generations to follow who have lupus of any type.

Have a lovely evening.

goldenwings
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Last edited by goldenwings; 07-08-2008 at 09:58 AM.

 
Old 07-08-2008, 02:22 PM   #9
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Re: Hereditory Link To Lupus ???

Topsy, Some articles I've seen suggest that autoimmunes can run in families, but not necessarily the same ones. In my family, I'm the first to be Dx'ed with lupus. Yet my mom took Coumadin for years due to thick blood, so I wonder if she really had antiphospholipid syndrome without her doctors (very small town) calling it that. And her mother had thyroid problems and died of kidney failure (same small town, during WWII). A few years ago my only sibling was Dx'ed as hypothyroid.

Dr. Wallace writes that hypothyroidism is fairly common in lupus patients. In the UK, Dr. Graham Hughes may cover much the same info in his books. I understand Dr. Hughes is one of the top lupus specialists in the world. In fact, it was he who did the breakthrough work on antiphospholipid syndrome, which is also known as "Hughes' syndrome".

...for what this is worth... Anyway, good luck! Sincerely, Vee

 
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