What Causes Lupus: More than likely, family history... - LUPUS UK

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What Causes Lupus

tennissenior profile image
13 Replies

More than likely, family history - can go way back! I don't believe there are any "specific" causes. Just like cancer.

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tennissenior profile image
tennissenior
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13 Replies
kazp profile image
kazp

I have had lupus since I was 9. I am now 42. I have had a myriad of tests over the 30 odd years I've had this. I've always ask any new Doctor how he thinks I got it. it is believed it is not a genetic mutation of any description that runs through the family.

tennissenior profile image
tennissenior in reply tokazp

I've read a lot about it plus my doctors agree. If my Dad had it...and my grandmother died at age 48 from a cerebral hemmorage (she was not sick), then chances are, in my case, it's genetic. I did read that 25% of cases are. Perhaps it's the SLE and not the Discoid. My Dad and I both have SLE. Both of my parents had anemia and my mother had hypothyroid - which I also have. I've traced geneology many times, but how much did doctors know 100 years ago? Don't you think it is possible that one of our ancestors had Lupus and never knew why they were sick??

kazp profile image
kazp in reply totennissenior

Its a possibility anything is. In my case, well how i see things is my genetic past is just that past. For me it's a daily battle so i tend to live for now and the future. What's done is done and can't be changed.

Honestly in the 32 years I've lived with lupus I've seen so many drugs, tests and ideas it's a certainty docs can't have known. They certainly didn't know much in the early 80s. Spending 9 months in hospital with 100s of tests etc for so many diseases. Thankfully scientific advances have evolved.

tennissenior profile image
tennissenior in reply tokazp

Dear Kaz,

You are so young and you have an excellent chance of going into remission! At my age when I was diagnosed, I have little or no chance of remission. I have so many "accompanying" diseases with the Lupus that I just play it day by day. You will one day have normal labs and have all of your energy back! I'm sure of that! It doesn't make a difference where we got it from - and you are so right in that most of the population has no clue as to what Lupus us and does. That's why I am here and I believe the same of you. Keep the faith, Kaz! You will be a fine, healthy person eventually!!!

kazp profile image
kazp in reply totennissenior

Thank you so very much. It's so great to hear such a positive reply. Alas in 32 years I've never had remission, but that's what positivity and hope is about.

Keep your spirits high (sometimes far easier said than done heh!)

Smile at yourself in a mirror at least once a day.

X

tennissenior profile image
tennissenior in reply tokazp

I'm telling you - so many people I know with SLE have gone into remission after having it for so long. You WILL be writing us one of these days with great news! Keep the faith!!!!!! Never say never!!!!! Positive thinking! If you don't have hope, you have nothing. I was diagnosed at age 67. Aging is difficult enough without all the "added extras." I still play tennis 4 days a week - I weigh about 109 lbs. and I do cruise ship fashion shows. I get into bed early even on a cruise because I am worn out by 8pm, but I still try and enjoy life. I don't have a good support system - my daughter-in-law got on the phone one day and told me I stress my son out because I am always sick, so I haven't seen nor spoken to my little grandkids in 14 months nor to him. He stopped calling and stopped the kids from calling. They are 11 months, 4 and a half, and 6 years old. She also knows what Lupus is. She has a friend who has it, who is Asian - she is too. It's rare for a Caucasian senior citizen to have it. No empathy from her.

The stress pulled my numbers down for a while, but I'm going forwward with my life and dealing with my sicknesses and I have good friends who are there for me. I have a husband as well, who is 12 years my senior, and after 4 years, I don't think he totally gets it. I'm sure lots of us have that problem. I managed to survive without seeing my son and grandkids and as I said - life goes on! Be well!

kazp profile image
kazp in reply totennissenior

It's totally wrong about your son and it the kids that miss out and for me that's unforgivable. But you are spot on I WILL have remission some day. Just need to get this chest infection gone (I've named in chester yeh how droll) keeps me gt which is darn hard right now! Its been an 8 week trawl starting with a lurg the blocked ear and sinus which left me with vertigo! Chester hopped straight on just as I was starting to walk in a straight line. I don't get lupus either it's a pain in my everything everywhere. BUT I'm darned if I'm gonna let it beat me!

My husband of 6 years supports me with the help of my son. I don't see my sisters they are far too busy to care. It struck a nerve at one time but they at least took time to come to our wedding. Wow not seen em for 6 years. Their loss. I have my hubbys family who fuss they only care and im grateful for it

I suppose I had better try and get some sleep

tennissenior profile image
tennissenior in reply tokazp

KAZ--Believe it or not what helped my husband's vertigo, which he had off and on for years, was Alprazalom! He couldn't sleep because every time he turned around the room went into a spin. I finally convinced him to start on a .25 mg of Alprazalom and he hasn't had a vertigo attack in 9 months! You may want to think about trying it. It's an anti-anxiety drug but it also helps "calm" internal nerves.

As for my son and grandkids - she's a whole different culture and there's a lot more about her that I am lucky to have her out of my life. That's what she wanted and she got it. My son maybe one day will wake up and see what he has. Until then - I'm going on with my life. And yes, my grandkids, who loved me dearly and I, them, are the losers. Gnite Kaz! Feel good!

kazp profile image
kazp in reply totennissenior

Just as you say its their loss and seems as though some of it has been positive.

Look after you!

PS i am going to look into the Alprazalom - thanks XX

Wendy39 profile image
Wendy39

My understanding is that there will be a family history and therefore you carry the gene for it, but then you need a "trigger" to set off the symptoms. You could be a carrier and never have any symptoms. The triggers can be hormonal, allergies, stress etc. When I had a big and long lasting flare in 2013 that lead to my diagnosis I had had my 3 children within 4 years, my allergies were totally out of control and I had lost 2 close loved ones within 6 months and my Dad was diagnosed with terminal cancer. I think therefore that my trigger at that time was a combination of all of the types of triggers. My Grandma had bad rheumatoid arthritis so that could be where my gene came from. Maybe one day, we will know more, genetics and our understanding etc are advancing all the time. Years ago Lupus would have been unheard of. People would have died and no one would have known it was lupus related. Even in the 1960 I think the survival rate was very poor, a large percentage of sufferers were dead within 5 years. Thank goodness there have been such incredible advances since then. I wish you well.

tennissenior profile image
tennissenior in reply toWendy39

Wendy - Do you truly believe a lot of people understand the terms "autoimmune;" Lupus, etc.? I had to send some friends an article I wrote, describing Lupus. They thanked me because they were smart enough to admit that they didn't have a clue. People tell me "Take a probiotic pill - you'll be fine." Duhhhh. I believe it was the shingles shot plus genetics in my case. Of course, I could be wrong. If doctors really knew what caused Lupus or arthritis or cancer - would they not be working on a vaccine? I get the same baloney emails from the Lupus Foundation about the "clinical trials." My Dad died in 1981. It's now halfway thru 2015. They're still in "clinical trials." They can come up with the internet, Smartphones, IPhones, IPads, IWatches and advanced technology - but as far as understanding and preventing critical diseases - we are no closer than we were before I was born! That's why we have to go on with our lives and remain active and fit because our doctors can't cure us. They can only monitor us and treat our symptoms. That's where it begins and that's where it will end. We have all been "down in the dumps" because we hope that everyone "gets it." But they don't.

kazp profile image
kazp

People your friends and family don't get it, do we the carrier's , the host body (sufferers) get it.

I like to think I can explain lupus to those that know me in the sense of the way it affects me and humour always has be there. They didn't get it in the 80s . I was 9 tested for a myriad of diseases none right lupus was the last they did and heh presto. It took 9 months to get to that I was alone for a fair bit as only my dads family lived in London. I wasn't supposed to have lupus at age 9! It mostly affests women, mainly Asian and Latinos and sometimes ( now more) white women from the age of about 30.

Lupus is me, I am lupus

tennissenior profile image
tennissenior

I would have gladly passed it on to my Laotian daughter-in-law! I went to a support group meeting once for Lupus, and the ages ranged from teen agers to 80's - Caucasian, Asian, African American, and Latino. Mostly women. Aren't we lucky? We get menstruation, pregnancy, labor, and now LUPUS??? Men get what?????? How many people have said to you "You don't look sick???" We all know the drill!

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