Is Lupus hereditary? - Lupus Message Board

nixx · 01-25-2001, 01:09 PM

I should probably know more about this disease and I apologise upfront for my ignorance.
Here is my story:
My grandmother was diagnosed with MS about 15 years ago - but her symptoms changed constantly and she was forever going backwards and forwards to the GP. This culmantated in an undiagnosed liver disease about 10 years ago. Around this same time my aunt (her sister) was diagnosed with an overactive thyroid. My grandmother was then diagnosed with an underactive thyroid.
Family get togethers were like some kind of medical forum as within months my cousin and my mother were both diagnosed with arthritis and underactive thyroids. All four family members had VERY similar symptoms and started a crusade to find out the real diagnosis.
After a few years my mother was reading the health pages of a women's magazine and came across an article for Lupus - she says it was like a revelation - she had every symptom.
Within a few months all four of my family members were diagnosed with Lupus.
My mother has up days and down days - overexertion of any kind means she has to take to her bed for up to a week to recover. She was always an active woman so unfortunately when she has an up day we have to practically force her to take it easy.
She has constant joint pain; she has been diagnosed with IBS; she is on several types of medication every day; her hair has thinned; she is sensitive to sunshine; she has a constant rash. She was previously an outgoing and highly active person and now it takes days of cajoling just to get her to come on a small shopping trip.
Does anyone know if there is a hereditary link - over the past few years I have started to display some of the same symptoms and thyroid tests have shown a marginaly underactive thyroid.
Also - which tests were you given to determine that you had Lupus - my mother has frequent blood tests but they only show up that she has an infection - nothing specific.
I would also know what I can do to help - the whole family is very understanding but sometimes we forget how ill she is.
Thank you for any help and/or advice you can offer.

Jeri · 01-28-2001, 05:59 PM

Hello, I didn't want you to get discouraged from no quick replies.
There are several studies getting underway, I hear, that are exploring the gene link.
I am newly diagnosed (since May) but realize I've had it for some time. In fact some of the symptoms (like Reynaud's) dates back to childhood.
What is almost overwhelming me is that my mom, who died in May, displayed classic lupus symptoms as I look back. She had severe kidney failure and a host of other autoimmune diseases and her HMO doc never said boo about it and never diagnosed nor treated anything. She was expendable, I guess, to the California HMOs. I wish I had known what lupus WAS then, it was two weeks after her death that I started my 2 month journey with my doctors before I was diagnosed.
I received a request from someone to participate in a family-link survey. I will try to find it and post it for you. I promise I will also gather a couple of links that I found useful while learning all about this. I did find a statistic last week from (who knows, but I remember the source seemed credible) that the known "numbers" show that our sons have a 3% chance of developing an auto-immune disease and our daughters a 10% chance.
Jeri

nixx · 01-29-2001, 09:18 AM

Jeri
Thanks for getting in touch.
Like you, my mother now swears that her grandmother had all the classic symptoms and just wishes that there was better awareness of this disease.
I would welcome any advice or contacts you could give me.
Thanks again
Nix

tina ballerina · 02-04-2001, 11:26 AM

hi nixx, I was diagnosed almost 7 years ago.
First thing was an underactive thyroid and then down hill from there. Kidney problems and now liver problems. I have been way back in history and apart from a cousin with a thyroid problem, there is nothing to suggest in my family that it is hereditary. I think i am just the unlucky one. up until I had my first child at 28 I had never had a health problem, may be the thyroid was playing up on and off but apart from gaining weight and feeling alittle tired I was always ok. I would be very interested in knowing how this terrible illness rears it's ugly head, but no one really knows yet....

Jeri · 02-04-2001, 02:34 PM

Hi Nix,
I'm finally back.
You might try going to egroups.com and search for rockingbabes it's a lupus support group. you may learn some stuff from persons who have been diagnosed with lupus.
I'm sorry that I can't set up a link for you, but if you will highlight, copy and paste each address into the address line at the top of your screen, you can get to these links on lupus:
[url="http://www.lupus.org/"]http://www.lupus.org/[/url]
[url="http://cpu2.omrf.uokhsc.edu/lupus/"]http://cpu2.omrf.uokhsc.edu/lupus/[/url]
[url="http://www.uklupus.co.uk/"]http://www.uklupus.co.uk/[/url]
[url="http://www.hamline.edu/lupus/index.html"]http://www.hamline.edu/lupus/index.html[/url]

I hope these will get you started. Your family member is fortunate to have you as her advocate.
Jeri