Do you believe Lupus is hereditary/genetic?

Genetic Component
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Do you believe there is a genetic genetic link? - 100.0%
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Do you have a family member with lupus? - 0.0%
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Have you tried "23 and Me" - 0.0%
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Would you rather know or not know your genetic history? - 0.0%

 
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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/12/2016 8:58 PM (GMT -6)   
Do you believe lupus is hereditary/genetic?
My sister, who also had lupus has sent her information into "23 and Me" to research her genetics further. She too has lupus, RA and colon issues. After sending her information in she was contacted by the company letting her know that an identical match came up linked to the paternal DNA. From what I understand they asked if she was willing to allow this person to contract her. It's a VERY LONG story, but I did not grow up with my father or his children, I am friends with them on Facebook, but that is the extent of our relationship, I was raised by my biological mother. I received a message asking me to call my sister on my my dad's side to call her a.s.a.p. We have not spoken verbally in many, many years, essentially that side of the family are strangers to me as I did not meet them until my early 20's, never, even saw a picture or that I had siblings on that side! Curiosity got the best of me so I called. She wanted to let me know that I have an older sister who had been adopted at birth! This information was linked as an identical match to my sister that called me via "23 and Me", what's even more of stunning is this new sister also has lupus!!! My sister who called to tell me about her also has lupus and we all have colon issues and RA (so does my son and my daughter is showing signs) Our father had Crohns and RA. We are all half siblings on my father's side, so it is evident this stems from him.

I'm so sorry for the very long text. I'm just VERY BLOWN AWAY, not because I have another sibling, but because this confirms yet again in my mind we have a genetic link. No matter how much doctors and scientists waver on the issue, this is pretty concrete evidence!

Thank you all for listening, for your support and for allowing me this please to get things of this nature of my chest rather than bottle it up and create stress!

Hugs and Good Health to All!
Melissa

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 5/12/2016 9:35 PM (GMT -6)   
There is some evidence that points to auto-immune diseases running in families, but it isn't really known how or why or linked to anything concrete yet.

It's very interesting that you all have such similar illnesses, isn't it?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/12/2016 10:03 PM (GMT -6)   
That's what I've always alwasrs heard as well. This latest information has threw me for a loop. As all goes down to we it is what it is and we never know l know what tomorrow will bring.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/12/2016 11:52 PM (GMT -6)   
That is amazing!
I found out a first cousin on my father's side has lupus too.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 5/13/2016 4:39 AM (GMT -6)   
Hi Melissa. Dr. Wallace's "The Lupus Book" latest edition states there is a 10% chance of your daughter developing SLE and a 2% chance for your son to develop SLE.

My only child is my 31 year old daughter. Wednesday she went to our dermatologist for a face rash. The doc had an ANA and anti-double stranded DNA drawn, just to be sure (she knows me).

We won't get results back until next week. Of course I hope and pray they will come back negative, but I think she will develop SLE sometime in her life, but only because she's always been sickly. So my answer is yes, there is a genetic link.

Your post is very interesting! Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/13/2016 9:26 AM (GMT -6)   
Prayers for your daughter Butterflake. As much as we don't want those test to come back positive, we also want our children to receive the medical treatment available to relieve the pain they are enduring. I know your torn in this, it's very, very difficult. My 28 daughter is in the same predicament at this very time, totally breaks my heart, but we have to remember it's out of our hands.

God's blessings to you and your daughter!

Melissa

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 5/13/2016 10:26 PM (GMT -6)   
Lupus is not a genetic disease but all AI diseases are believed to have a genetic component. We inherit a set of genes that predispose our immune system to a disruption but in order to get sick there has to be a trigger(s) of some sort. Statistics do show that autoimmune diseases do run in families but not necessarily the same ones. The variables are the triggers or lack thereof.

http://www.aarda.org/common_thread_art.html

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/13/2016 11:23 PM (GMT -6)   
Thank you for your input Bill and for the link to the article. Everyone is entitled to their own opinion, to each their own. I did say "lupus" perhaps I should have said "autoimmune". Either way, nothing will change my mind that there is a genetic component to autoimmune disease. I do however believe that while may be predisposed to the gene there is either an environmental or a stress factor in ones life should you be a character that activates the gene.

There simply is too many factors in my own family that point in this direction for me to change my stance on this. As well, I have had doctors tell me my family and I need to consider an on going research program to prove this point

Either way, I continue to be blown away by this latest finding in my own family, it has truly be unsettling for me in many ways.

Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1278
   Posted 5/14/2016 12:30 PM (GMT -6)   
I think people make way to much about the genetic component. You are born with your genes and most sickness shows up many years later-you didn't get new genes. Genes can be influenced by many things-such as heavy metals-root canals and parasites to name a few.
Said another way you can find pockets of people who live off the land and have no words for cancer, heart disease or autoimmune. If the move to US a generation later they get all the disease we do-there genes didn't change but their diet and dental did.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/14/2016 5:14 PM (GMT -6)   
Magoo2,

I would agree with you that our environment and what we consume has much to do with our health no doubt. That said, I also know that I have been sick for as long as I can remember, so yes our genetic make up does make a difference as far as I am concerned. And for my birth father to have 3 daughters to have Systemic Lupus there is no denying that. For me my diagnosis may have been given when I was 28, but my illness began as an infant. The same was for my son. I did not grow up with either of my biological sisters so I do not know what their health conditions were. I also know that I lived in the country in upstate New York until age 10, then moved to a mid size city in dry, arid west Texas were I have lived since so my environments were totally different.

For me, knowing this disease was passed down to me and that I've passed it down to my children is mentally disturbing. I pray everyday for a cure for all of us, and most of all for my children. Most of all I pray it is not carried on to another generation.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 5/14/2016 5:25 PM (GMT -6)   
From NIH: "SLE and other autoimmune disorders tend to run in families, but the inheritance pattern is usually unknown. People may inherit a gene variation that increases or decreases the risk of SLE, but in most cases do not inherit the condition itself. Not all people with SLE have a gene variation that increases the risk, and not all people with such a gene variation will develop the disorder.

In rare cases, SLE can be inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have mutations. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition."

It has not been found that lupus is a genetic disease except when the autosomal recessive pattern is inherited from both parents. In order to pass it on to the next generation both parents would have to have autosomal recessive pattern so it is likely you cannot pass it on to your children.

https://ghr.nlm.nih.gov/condition/systemic-lupus-erythematosus#inheritance

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/14/2016 5:54 PM (GMT -6)   
Well, I guess my family is an anomie then, my birth father was a "rounder" to put it kindly. My two sisters and I have different mothers. My mother is deceased, she did not have lupus, nor did she have any signs of it. I do not know of my other sisters mothers having Lupus either. My son is a research scientist who studied specifically with the intent of learning more about our disease. He has a masters in immunology/pathology and plans to continue on for his PhD with hopes of researching in the lupus field. There are many, many theories out there, some for and some against the inheritance theory. I prayed for years it wasn't, I also thought what are the odds my kids will get it if it is, especially my son if there's a 2% chance. Well, I have two children, one son who should have had a 2% chance, bam diagnosed at 19, sick all his life. My daughter has all the signs, our doctor says she has it but has not labeled her yet. So, I have 100% odds at passing it on, not good no matter what article I read. My birth father had 8 children (that we now know of) 4 girls, 4 boys, 3 of the girls have lupus, that's a 37.5% chance of passing the gene on (not good). He had Crohns and most likely had lupus, so he was a carrier no doubt.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/14/2016 5:59 PM (GMT -6)   
I do like your tag line Bill "Remain Optimistic and you can Overcome." None of us have control over what tomorrow brings, or what cards we are dealt, life would be pretty bleak if we didn't remain optimistic and keep, keeping on wouldn't it.

Just so everyone knows this is just a topic that interest me for discussion, it is not something I am bitter about or that brings me down in any manner. I am truly one that is happy for what have and thank God for today, because for as bad as I may think I have it there is always someone worse off than I.

Hugs,

Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 5/14/2016 10:10 PM (GMT -6)   
Suggest that you contact NIH and ask them to study your family. I am sure it would be of interest to them and might help unravel the mystery.

I do not believe that everything can be overcome but I did come back from being quadriplegic and without that optimism and effort I would not be typing this today. Life is unexpected to say the least and there is no way to know what will come tomorrow so make the best of today and the future will take care of itself without our help. None of us can take the blame or credit for our ancestry.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/15/2016 11:30 AM (GMT -6)   
I have had doctors tell me I should contact NIH, I need to talk to my family about this seriously.

You are an inspiration Bill, thank you for sharing your story.

Hugs,

Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 5/16/2016 10:57 AM (GMT -6)   
I have great news! My daughter's ANA and anti-double stranded DNA are both negative. Bill I always enjoy reading your posts as you often provide insight and a different view.

This is a non sequitur, but you may remember that I worked in HIV at the Centers for Disease Control and Prevention. CDC isn't currently involved in causes of Lupus (NIH is much more involved in that), but CDC has received more funding for studying the epidemiology of Lupus. I belong to a CDC study called The Goal Project. Each year I fill out an extensive survey and the survey focus changes each year. This year their focus is cardio-vascular disease. So far they have only gathered data in Georgia, but perhaps with more money they can extend their field. Either way, it's good to see progress at federal agencies. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 5/16/2016 11:12 AM (GMT -6)   
Definitely good news, Butterflake! I've been waiting for the results on your daughter.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/16/2016 11:24 AM (GMT -6)   
That's great Butterflake! Is she still feeling bad? I too have been wondering about her test results. Glad to hear CDC has received funding as well, that's awesome news!
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