Hi there, was wondering if anyone out there has a... - LUPUS UK

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Hi there, was wondering if anyone out there has antiphospholipid syndrome contracted from SLE and had children??

Sarahmac profile image
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Sarahmac
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10 Replies
MandieR profile image
MandieR

yes huni.....I have two daughters 26 and 15

they are both perfectly well, fit and healthy and always have been

do you have concerns about having children?

Lulabelle profile image
Lulabelle

Yes, but it wasn't plain sailing for me. I was diagnosed with protein s deficiency a blood clotting disorder and Anti phospholipid Antibodies after my son was still born. I was told it would be very hard for me to go on and have any children. However, it was possible with close monitoring, baby asprin 75mg and daily injections of frgamin blood thinners - my daughter will be 11yrs old in April. Not long after her I was diagnosed with Sjorgren's and due to being severely ill could not have anymore children. I was diagnosed with Lupus SLE OCt 2010.

Lulabelle x

Sarahmac profile image
Sarahmac

Thanks for your replies....they are much appreciated!! :) I was diagnosed at the end of Jan this year with SLE and 'sticky blood' syndrome so this is all very new to me. At the minute I am just trying to educate myself on it all!! With the blood syndrome all I keep seeing is how difficult having children can be.....to be honest it has really scared me as I have always wanted to have a big family.

Sarah x x

LucyLocket profile image
LucyLocket

Hi Sarah

I'm sure you are still dealing with all the implications of your diagnosis and it can all seem very daunting and frightening.

I have probably had SLE since my mid-teens although it was not diagnosed as such at the time. I had my first child with few problems (although with hindsight I think I had an early miscarriage before having him). When we tried for a second child I had two more miscarriages followed by difficulties getting pregnant at all. Luckily, my GP did lots of blood tests which revealed the antiphospholipid antibody problems as well as markers for SLE - as a result I was eventually referred to the Recurrent Miscarriage Clinic in London where I was told that what I had was lupus. I was given some other treatment to assist with conception and eventually I did manage to get pregnant again and was only treated with aspirin (150mg per day) but luckily for me no heparin or fragmin injections. After I had my daughter I did also discover that she could have had neo-natal lupus herself as I am anti-Ro positive but she was actually fine.

I would say to you that you mustn't let it stop you trying for a family - I know other women who had Still's Disease like me in their teens who were told they mustn't get pregnant. It's best to get as much information as you can and try to see a consultant before you get pregnant so that they can keep a very close eye on you. I too wanted to have a large family but sadly that wasn't meant to be but I am very fortunate to have two fantastic children and I know that this makes me a very lucky mum.

Good luck to you Sarah x

Nanuuk profile image
Nanuuk

Hi! Yes APS is one of my Lupus 'add ons'. My pregnancy was unplanned ( as were all the miscarried - birth control doesnt seem to work with me whatever I use!) but the doctors acted swiftly & I was closely monitored all the way through. I went into labour &gave birth to a healthy boy @ 36wks - he was in a rush to get out from 23wks.

Wish you all the best.

Hi,

My daughter was diagnosed with APS following her first pregnancy and has since gone on to have a relatively trouble free pregnancy with her second baby. She was very closely monitored and had excellent care.

I do hope that things work out for you. x

alison45 profile image
alison45

Hi I was diagnosed with APS 18 years ago following the Stillbirth of my first son, I then had my beautiful Girl who will be 17 this year. my second son was also stillborn a year later and would have been 16 this year, so yes it can happen.

You will be very closely monitered but it will be worth it to get the end result.

You take care and the best of luck

xxxx

LynseyH profile image
LynseyH

Hi - i didnt realise so many others had these problems!! i have antiphopholipid syndrome, ITP and SLE. After 9 miscarriages and a still birth my antiphospholipid was diagnosed - since then i have had 2 successful pregnancies, lilly will be 4this year and mya has just turned 2. It def wasnt easy but i had a great haematology team and with daily clexane injections and low dose aspirin it is possible. I would just say to you tho that i now find it a struggle to care for my babies - its all worth it, but the pregnancies accelerated my lupus symptoms....def something to keep in mind if you dont have a great support network. I love my little miracles, but Lupus def makes it hard to enjoy every little second. The stuff 'normal' mums struggle with can be enough to put a 'lupus' mum in bed for a week!! good luck xoxox

LynseyH profile image
LynseyH

sorry - just an add on to the previous post - Lilly was born premature at 34wks 3lb 7oz and mya was 30wks at 3ld 1oz. This was due to growth restriction - part on antiphospholipid. both are fine now but suffered in the immediate weeks after birth with lung complications, bleeding on the brain and various sepsis. You will have extensive support from neonatal but should be aware of complications after birth xoxoxo

kimberleyc profile image
kimberleyc

Its so so good that diagnosis is much sooner following recurrent miscarriage I have 3 fab children( 2 grown up 1 still at home and 1 who sadly died ). I had prem births with them all. I have been pregnant 16 times and it was only following the last miscarriage that I was eventually refered to a miscarriage clinic. APS was diagnosed and later SLE maybe things could have been so different if diagnosed sooner. However back then it was just seen as bad luck and I was encouraged to keep trying .

Dont give up with support and anti coag treatment there is hope of a good outcome . Good Luck x

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