My mother asked me to post this actually. My mother went into premature labour with me and she was given medication to halt progress. I was born with 'skin issues'...think it was very dry and lacking in elasticty?...also bowel issues since birth etc etc. Never gave it much thought until I developed 'full blown' Lupus. My mother (who practiced as a nurse) has a theory that the medication affected my immune system which of course is still developing in utero and even post natally and she wonders if other Lupus suffers may have similar histories?
Thanks x
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steadilymovingforward
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I have lupus was diagnosed 3 weeks ago been suffering with my bones for 5-6 years I am 22 and was born 10 weeks early and put into an incubator for weeks on end. I have had asma and was on the incubator liquid form my asma went but now gas come back with avengents. I have sufferd with my ears all my life have had 4 operations on each ear and still has 50% hearing in each ear. I was also admitted into Hospital because of a rash and a viral infection. I should also mention I died when I came out of hospital when my mam had me but thank my lucky stars and having the luckiest Mam in the world brought me back. I wouldnt be here if it wasn't for her. She had an sincerian on me as I was turned the rong way and couldn't push me out. I also have a huge family history of osteoporosis and rheumatoid arthritis.
I have just been diagnosed with lupus (39 years). I'm adopted but have found out that I was born 8 weeks premature, had jaundice and problem with my feet......my oldest daughter (13) was also born 8 weeks premature and they don't know why. Both my other children were born 4 weeks early too.
my mother had 10 years of miscarriages before finally managing to produce me. in order to prevent more loss, her gyn had her take an artificial oestrogen called DES for 9 months and stay in bed. since then it has turned out that DES actually is an effective morning after pill, amongst other things...so i guess some DES babies must've been born prematurely....(DES is also used as a chemical castration agent).
well, whatever, i was born at more or less the right time, and during infancy developed a typical rash on my trunk/arms/face, so was diagnosed with lupus. but this was way back in '53, when lupus diagnosis & treatment wasn't as evolved as now.
in the early '70's there was an international scandal about DES: researchers discovered it had given a great proportion of DES babies terrible birth defects in our reproductive organs and also terrible rare cancer of the vagina. this was a sort of hidden thalidomide. countries urged gyns & gps to stop prescribing DES, but the news took time to filter down through the systems. there are many DES daughters & sons who do not even know they had been affected. many of us, like me, have been infertile, and now we are prone to rare vaginal etc cancer as we go through menopause. researchers now think the effects of DES pass on to the next generation through DES daughters & sons.
lately my nhs gyn unprompted told me she thinks DES is probably responsible for my SLE
my mother didn't take DES while pregnant with me youngest sister, but she was born prematurely with erythroblastosis fetalis, which is a liver prob to do with RH negative blood incom[patibility in the parents. she was totally transfused several times and in an incubator. in her early 50s, she developed a rhumatiod condition. my mother has had mypothyroid since menopause and both she and i have lichen sclerosis. these are all considered autoimmune conditions.
i hope that in my lifetime, researchers work fast enough to better understand how genetics, environmental exposures/conditions and whatever combine to create all these problems & conditions we have....and i hope something can be done to reduce their incidence
Hope it's ok with you if I private message you here on this forum (instead of replying here in this particular thread). Will do so ASAP - busy today, sorry
I had two girls 22 and 24 years ago the first I had preeclampsia and was induced, she was late but small, she had bowel problems, my second was born 4 weeks premature, she was also induced, had lots of problems, eczema, thrush, asthma, celiac and allergies to cats, horses and sheep. She recently has had joint problems which I didn't know about as she has lived away for the last 3 and half years. Not sure if this helps or not but the only factor that I can think of are the drugs used for inducement or heridatory.
Hi I was born 5 weeks early weighing only 5 lbs and I have lupus, MCTD, APS etc its weird but I was just saying to a friend this morning how I think being a prem baby definitely affected my immune system as I was always a weaker child than my siblings from eczema to chronic joints pains which of course turned out to be lupus and lots of overlap diseases! Definitely a connection!
Humans have some 20,500 genes. At least 12 of those genes have been implicated in the development of lupus. Even if you have the genes, they may not be expressed, that is, you may never develop lupus. In cases of genetically identical twins both will develop lupus only 24% of the time.
Lupus has nothing to do with the medications you mentioned. You can only develop lupus if you have the lupus genes AND if those genes are expressed. Stress is one of the most significant triggers for lupus gene expression.
I have had SLE since very young and always thought it had to do with extreme trauma that I went through almost daily for about 5 years prior. Then it followed with the loss of my first two newborns, then Graves Disease (toxic goiter.) I had never thought about a DES connection until reading this. Since my mother did havethat when I was 12 weeks along, perhaps it is possible.
I was also born premature,10 weeks. I have lupus flares now for almost five years, but all lupus markers are negative. Have allergies on lot of things and irritable bowl syndrome.My mom almost all pregnancy was taking pills for keeping her from premature labor. I was testing for lupus genes but I don `t have any of them.
I was not born prematurely but have had a lot of stress in my life I have also had two lots of IVF treatment, your body is bombarded with hormones. The first was successful but sadly my beautiful twins died 3 weeks apart & they were stillborn at 25 weeks. Thankfully I went on to have my lovely son (now 6). They discovered my APS whilst I was 15 weeks pregnant with him. My body didn't cope well with being pregnant and he was born 5 weeks early due to both my lungs collapsing (pneumonia) and then when he was 6 months old my husband had to have open heart surgery. So to conclude,I think hormones as well as stress has triggered my "lupus symptoms". My headaches first started in puberty. So I don't think there is just one reason for lupus it's a whole cocktail of things. I am being treated for mild lupus symptoms but like a lot of others am constantly told u don't have it!!! But u am so tired from just typing this reply! Doh, having a NO spoons day!! Best wishes to you all.
Hi, After 5 miscarriages I was given high doses of prednisalone on my 6th pregnancy and had my son at 30 weeks (he was 10 weeks early, weighing 2lbs), he is now a young man in generally good health except for the diagnosis of Gilberts syndrome, which I think is related to an autoammunity problem.
Hi all, interesting reading. I was born 6 weeks early with jaundice. Later in childhood developed asthma and severe migrains and then at 14 was very ill with tonsillitis and quinsey
which took forever to recover from, well thats what the GP said it was as that was at the time when all the doctors and nurses were on strike. All i can remember was the doctor came to the house everyday to see me and didn't even have the energy to stand. Looking back classic symptoms of lupus rearing it's ugly head.
I was very interested in your question as myself and my identical twin were prem babies (1972), my twin had glandular fever at 16 and was diagnosed with lupus at 20 (sadly she passed away at 32 in 2004 ) and then I was told I had lupus in 2005, my mum then had a another set of twins eleven years later (1982); my brother has had M.E. since 16 and his twin (my sis) was diagnosed with lupus in 2011.......we were all born early and were in baby care units until we were stronger and heavier etc.....x
apologies my message is jumbled but my brain fog is thick today
This is fascinating,I know that I was born at least one month early,difficult to define as my parents are both not alive..and don't know I have developed lupus.I had terrible skin problems....could not be bathed and had lots creams .I also had an intolerance to milk..tho never proved,I still cannot have it.I also had glandular fever in my teens,and then had to have hormone treatment for endometrosis ...and have read recently that ,that affects the immune system.I also have had breast cancer at 31 ..and I feel that is what tipped my immunity over the edge ...has anyone else got lupus after chemo?I am still here though !!
Luppykate you've been through so much! You must be incredibly strong! I have heard a lot of people develop Lupus after glandular fever too. There are quite few ladies here who have had chemo treatment but not sure if they had Lupus already or not. Hope you are well on your way to recovery xxx
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