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Medical Forum / Diseases and Disorders / Lupus / April 2004

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Family Lupus

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misc - 16 Apr 2004 11:25 GMT
I am the only lucky one in my family with lupus (diagnosed aged 15 - that
was 22 years ago).  My mum has recently just been given a 'may be' of
Sjogrens.   Just wondering if anyone else has siblings, parents or children
with lupus or lupus-related diseases.

Would really like to hear others stories.

Winny
kcat - 16 Apr 2004 17:30 GMT
>I am the only lucky one in my family with lupus (diagnosed aged 15 - that
>was 22 years ago).  My mum has recently just been given a 'may be' of
[quoted text clipped - 4 lines]
>
>Winny

Hi Winny.

Mum has Sjogrens and hypothyroidism and had endometriosis treated in
her 30s by hysterectomy..  (endo is now thought to be autoimmune)
Daughter has hypothyroidism, MVP, and a positive ANA (but no other
autoimmune dx at this time - she's 20)
Sister has SLE (dx about 15 yrs. ago) and was recently dx'd with MS as
well.  Sister had endometriosis treated a couple of years ago
(hysterectomy)
Brother has no AI diagnosis but wears a constant "butterfly" rash and
has for several years.  He has a lot of AI-like symptoms but of course
he's a man so a) he doesn't care what they call it just fix it and b)
most docs miss AI disease in men.
I have UCTD/FM/Raynaud's and probably Sjogren's made worse by
medications used to treat the various things going wrong due to the
UCTD.
Aunt and Cousin (My mom's sister and niece) both had endo - I believe
both have had hysterectomies but am not certain.  Cousin had hers when
very young and it was *severe* - Aunt also has MVP.  

In addition to all this - there are some indicators that the gene for
Marfan's Syndrome is present in my maternal grandfather's family that
has been passed down but expressed "mildly" - this would account for
my very tall Aunt, her very tall kids, and my daughter's incredibly
long limbs.  Same aunt and daughter that have MVP - common in
Marfan's.

we're a fun lot aren't we?  :-)

I will say that despite all of that - only one family member is
looking at life-threatening illness at this point - my 44 y.o. sister
with the MS.

'zat help? :P

the party line is:  Most families will not have multiple SLE diagnoses
but will have instead a variety of autoimmune conditions if caused by
a genetic predisposition.
***********************************
KCat - I am not a medical professional.  The contents of this post are based soley on my experiences and opinions
http://www.ghg.net/schwerpt/kcspages/
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Andy - 16 Apr 2004 19:40 GMT
[
> but of course
>he's a man so a) he doesn't care what they call it just fix it
[]
Agreed

>we're a fun lot aren't we?  :-)

Well, it sure beats watching paint dry.
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

RhondaM - 16 Apr 2004 18:26 GMT
My son is having symptoms:Joint pain, some rash, fatigue, unexplained
fevers.
My little sister has the rash, fevers, and joint pain when she has the rash
this is all unexplained.
My grandmother has Sjogrens, positive ANA, joint pain and fatigue...no
diagnoses of Lupus though.
These are on both sides of the family tree.
My great grandmother had rheumatoid arthritis which is what I have along
with Lupus.
I can see a family connection.

> I am the only lucky one in my family with lupus (diagnosed aged 15 - that
> was 22 years ago).  My mum has recently just been given a 'may be' of
[quoted text clipped - 4 lines]
>
> Winny
Larry Walker - 17 Apr 2004 01:57 GMT
>I am the only lucky one in my family with lupus (diagnosed aged 15 - that
>was 22 years ago).  My mum has recently just been given a 'may be' of
[quoted text clipped - 4 lines]
>
>Winny

My mother died of MS at near 80 years old after having about 30 plus
years.

I'm male, 76 years old and haven known having Lupus for about 5 years
now.

I have often wondered that in 1982 I had a four plus Staph infection
and was give some pretty strong medication for five days and that may
have messed up my immune system. I keep wondering what could have
started my having Lupus as i'm the only one to have it, both sides of
my family. I am half Seminole-Creek Native American.

Maybe some day there will be an answer.

>>>---LDW---->
JBAB7542 - 17 Apr 2004 02:58 GMT
There is no known Lupus or autoimmune diseases in my family. I am the first
one.  Not too lucky I guess.
Shelagh - 17 Apr 2004 03:05 GMT
| There is no known Lupus or autoimmune diseases in my family. I am the first
| one.  Not too lucky I guess.

ditto.... we are the 'pioneers' lol!
........... Shelagh
J - 17 Apr 2004 13:25 GMT
> My mother died of MS at near 80 years old after having about 30 plus
> years.

So Larry, autoimmune (MS) runs in your family.

> I'm male, 76 years old and haven known having Lupus for about 5 years
> now.
[quoted text clipped - 4 lines]
> started my having Lupus as i'm the only one to have it, both sides of
> my family. I am half Seminole-Creek Native American.

http://www.arthritis.org/research/research_program/Lupus/default.asp
SLE disproportionately affects minorities.
Lupus occurs three times more often in African-American women than Caucasian
women
and is also more common in women of Hispanic, Asian and Native-American

J
Gretchen - 17 Apr 2004 11:06 GMT
No one formally diagnosed with lupus except me, but... my daughters
(ages 12 and almost 15)both have some problems that are very much like
things that were going on with me at that age.  I wasn't diagnosed
until 5 years ago.

Gretchen
Smelly Melly - 17 Apr 2004 11:19 GMT
I am the only one with a dx in my family as well although 2 of my sisters
show signs of it and so does my dad but they all refuse to have the tests...

LOts of love
Mel
xxxx
> No one formally diagnosed with lupus except me, but... my daughters
> (ages 12 and almost 15)both have some problems that are very much like
> things that were going on with me at that age.  I wasn't diagnosed
> until 5 years ago.
>
> Gretchen
J - 17 Apr 2004 13:27 GMT
> I am the only lucky one in my family with lupus (diagnosed aged 15 - that
> was 22 years ago).  My mum has recently just been given a 'may be' of
[quoted text clipped - 4 lines]
>
> Winny

My uncle had it, my brother might have it.
I have autoimmune thyroid.
He and I seem to get things around the same time (sister, brother and me
thyroid)..now he and I elevated glucose levels.
However he's the one with the consistently elevated ANA and had the malar rash.
(I don't know if he still has it or not).
J
saggums - 18 Apr 2004 02:18 GMT
I am 50 years old and was DXd with Lupus about 5 years ago.  This was after
many years of "something wrong" but no one knew what.  I have a first cousin
with confirmed RA.

My grandmother (same side of the family) - whom we lived with when I was a
child, had enormous joints on her hands and feet.  We are talking about a PA
Dutch woman who was married in 1900 and probably never went to a doctor.
She had all her children at home and had to cut holes in the bedroom
slippers she always wore so that the pressure on her joints was relieved.

When encountering a situation like this, it is very difficult to get to the
heart of the matter.  Science and society were both very different then.
How can you say if someone from that generation and with that socialization
had a disease?  You can only guess, and do your best to pass the information
on to future generations.

> I am the only lucky one in my family with lupus (diagnosed aged 15 - that
> was 22 years ago).  My mum has recently just been given a 'may be' of
[quoted text clipped - 4 lines]
>
> Winny
Chaos Hill - 19 Apr 2004 15:43 GMT
My family is filled with similar ills and possible links............. both
maternal and paternal - I am of partial Native American descent, part
Irish...

My entire family has arthritis of one sort or another, sun sensitivity in my
grandaughter and son as well as three nephews and neices - my daughter has
had many questionalbe problems.... I was a DES baby - from the fifties when
woemen miscarried they gave them this - so for much of my life it was either
linked to this or arthritis or central nervous symptoms..... I have had four
doctors in my life tell me that I have Lupus SLE.... I have had four tell me
I have MCTD.... I have had four tell me I was simply menopausal and somewhat
imbalanced.....

what does one do?
the best I can

Leslie

> I am the only lucky one in my family with lupus (diagnosed aged 15 - that
> was 22 years ago).  My mum has recently just been given a 'may be' of
[quoted text clipped - 4 lines]
>
> Winny
NW - 19 Apr 2004 20:10 GMT
In my family tree there's every autoimmune disease under the sun.

Nina
 
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