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Old 04-21-2007, 03:05 AM   #1
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Dj1Chickee HB User
Question Family members with Lupus?

Hello All,

I am very curious to know how many of you Lupies here on the board have family members who also have been diagnosed with Lupus. The reason is that I have so many in my family that have.

My father had Lupus (deceased), I have Lupus, my daughter has Lupus, my sister (she is my only sibling) has Lupus, and her daughter has Lupus.

Is there anybody else out there with family members who have also been diagnosed with Lupus?

Wishing You All Pain Free Days,

Chickee

 
Old 04-21-2007, 10:42 AM   #2
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Join Date: Apr 2005
Location: TX
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ErinS64 HB User
Re: Family members with Lupus?

Quote:
Originally Posted by Dj1Chickee View Post
Hello All,

I am very curious to know how many of you Lupies here on the board have family members who also have been diagnosed with Lupus. The reason is that I have so many in my family that have.

My father had Lupus (deceased), I have Lupus, my daughter has Lupus, my sister (she is my only sibling) has Lupus, and her daughter has Lupus.

Is there anybody else out there with family members who have also been diagnosed with Lupus?

Wishing You All Pain Free Days,

Chickee
So far the only members of my family to be diagnosed with lupus are me and my half sister. She was diagnosed a little over 10 years ago and has a very mild case. She was only around 22 when she was diagnosed. Mine didn't become obvious till I was almost 40. I have had health problems but nothing that yelled out that there was anything more than what I would think of as a flu or bug... Till I was hit hard and couldnt see or walk...Let face it, at that point you KNOW there is definately a problem. Then it took a year and a half to actually pinpoint the problem. I have had an extremely active hard to treat case. Maybe because of my age or who knows. I didnt think it was lupus because it was so different from hers but my doctor told me it is different for everyone, no matter if they are related or not.

I have concerns for my kids because of it's genetic link, and three of my four children are girls so it is even more concerning. I have a 15 year old daughter that is complaining of things that are very unsettlingly familiar and am really hoping it is just growing pains or sports related.

From my research it takes a trigger to set it off. Both my sister and I had hysterectomies at pretty young ages. Did the developing lupus cause the need or did the surgery and hormone fluctuations cause the disease. Who knows?

From what I have read though, your family is not the norm and I am so sorry for your difficulty. That is alot of lupus. Which kind of makes you wonder about environmental factors. Twins with identical dna only have a 25% increase in lupus if one has it. There are alot of researches going on right now that are looking for families just like yours so they can isolate the genetics that contribute to the development of lupus. You might want to look into it.

Erin
Dallas, TX

 
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Old 04-21-2007, 11:58 AM   #3
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jenilee70 HB User
Re: Family members with Lupus?

Quote:
Originally Posted by Dj1Chickee View Post
Hello All,

I am very curious to know how many of you Lupies here on the board have family members who also have been diagnosed with Lupus. The reason is that I have so many in my family that have.

My father had Lupus (deceased), I have Lupus, my daughter has Lupus, my sister (she is my only sibling) has Lupus, and her daughter has Lupus.

Is there anybody else out there with family members who have also been diagnosed with Lupus?

Wishing You All Pain Free Days,

Chickee
Wow, that's a lot of people with lupus in one family.

My father had lupus, my sister has lupus and my father's sister has lupus but her case is very mild. Her children are grown and neither has any signs of lupus. My father had three siblings, so two out of four had lupus.

I'm not diagnosed with lupus although I have positive ANA and several symptoms, but I probably have some kind of arthritis and/or connective tissue disease, which is not definite enough to be diagnosed yet. I know there is a genetic link and I worry about having children, but from the literature I've read, it's really not supposed to be that much of a risk.

From what I've read, if one identical twin has lupus, the other will develop it in more than two-thirds (69%) of the time, but if the twins are not identical the likelyhood is only 5%. Overall, only 10% of people with lupus have a family member with lupus according to a study made in 1994 (McKann).

So it looks like your family and mine (although less so) is different from the norm. I know that the heridity of lupus is being actively studied and hopefully something will come out of it.

There's supposed to be some sort of environmental trigger (otherwise identical twins would always both get lupus), but I don't think anyone knows what it is. In my family, neither of the women with lupus had hysterectomies or other major surgery prior to getting sick and there's nothing specific I can point to that triggered their illness.

Wishing you and your family all the best.

Last edited by jenilee70; 04-21-2007 at 12:02 PM.

 
Old 04-22-2007, 05:41 AM   #4
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Family members with Lupus?

Hi, Chickee. My maternal grandmother died suddenly in her mid-50's of kidney failure, cause unknown. She had asthma & thyroid problems, incl. a goiter, both likely autoimmune.

My mother had many of the same problems I have but was only Dx'ed with irritable bowel. She had rashes, IBS, migraines, anemia, and "sticky blood". She took Coumadin for decades. She lived to almost 89.

My Dad had Parkinson's & lived to almost 91.

My sister is hypothyroid & gets rashes.

I'm the only one with a formal Dx of lupus. I'm also the only one who has seen metro doctors, incl. teaching hospital doctors. Hmmmmmmmm....? Best wishes! from Vee

 
Old 04-22-2007, 08:50 AM   #5
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goldenwings HB User
Smile Re: Family members with Lupus?

Nope, only little 'ol me.

Take care

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
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