LUPUS UK
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why i'm i the only one in my family with this

i got told in july 2010 that i have lupus i still dont know anything about it all i was told i cant have a family.

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Hello Mitchel

That sounds pretty drastic. Can you clarify what was said.

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Hi, I was diagnosed in 1976 and I made a decision not to have a family as i could barely look after myself let alone a baby.

I agree with Thaddeus you need clarification from your specialists and I'm sure there are a lot of Lupus ladies that have had a family and are doing ok.

keep well x

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hi Mitchel im the only on in my family with this disease its just how the dice role.

and as to having your own family do chat more with your consultant and even ask for as second opinion.

i havent had children myself it didnt seem right when i am so poorly i didnt want them to be my careres. my hospital has specialist lupus pregnancey clinics where rheumy and obstertrics work together, so it can be done in many cases, but usually under very close observation because of risks to you or the baby from disease or medication.

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Hi mitchel, i also am the only one in my family that has lupus, it was eventually diagnosed long after i had problems with pregnancy. On a positive note i have 3 wonderful daughters, 2 of whom have Hashimotos (thyroid) and raynauds, 1 with Asthma,

Things have definitely advanced since then tho, and i am quite sure that your specialist will take great care if you decide in the future to have family.

Good luck and best wishes to you xx

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Hi Mitchel, I am the only one in my family who has lupus although my sister does have an an autoimmune disease. Don't know if there is any connection or not. I was diagnosed with Lupus in 1990 and I had my son in 1997. I do not have antophospholipid syndrome and just took the usual folic acid. Nobody recomended against pregnency. It was not a straightforward pregnancy and I spent most of it in hospital. He was born 6 weeks early because the problems I was having were starting to affect him. I was not able to breastfeed because of the medication I was on. He is a healthy, normal teenager but we did decide to leave it at one child.

You need to speak to a obstetrician but plenty of people who have Lupus also have children. Good Luck.

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Hi mitchel,

I think it is definitely worth listening to what everybody has said here. Many people with lupus have children after being diagnosed. Did your doctor give a reason for you not being able to have a child?

If you like I can send you an information pack in the post so that you can learn a bit more about lupus. If you send me a private message or email me at paul@lupusuk.org.uk with your address then I'll post one out.

Paul

LUPUS UK

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Take all in all the above, I question not be able to have Children,but i do not Know the reason they have said this, and have never heard a Male Lupus being told this.so please clarify Why,for your own well being to what the future holds,and read as much as you can about Lupus U/K Only

But i would take the offer that Paul has extended to you.

All the best

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I agree ask for a second opinion, and also more information i like you was advised i had sle and then left without a clue what it was or involvedas this was a good few years ago my partner and i started researching this on our own, he found an old medical dictionary at his mums which was bleak and only gave a ten year life expectancy, thankfully due to medical advances this is not the case i then got a consultant who was brilliant and on the ball and i have 3 happy and healthy kids so dont panic ask as many questions as you can think off and hopefully a good conultant. good luck and best wishes.

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Mitchell- if ur doctor told u that then he obviously knows nothing about Lupus... Most autoimmune diseases go dormant during pregnancy and 3 months after. I have had 4 wonderful children (2before I was diagnosed and felt fine, and 2after I got sick) three pregnancys were good and one I was nauseated all 7months and then gave birth early but that could be related to Lupus or not. As with any disease you worry about passing things on to your children but if that were the case, then nobody should procreate cause nobody is perfect. I'm not going to say life isn't difficult with lupus- because it is. But the most important thing for everyone on this thread to remember is to keep ur spirits up. Your body reacts to stress negatively and will cause flares in ur condition. The biggest thing I tell my self on a daily basis is even though I have MS,Lupus, RA, fibromyalgia, reynauds, and even IBS (haven't pooped for days! :-0 ) I stay positive because Lupus is a blessing, there are so many other debilitating diseases that are far worse- people with terminal illnesses like cancer would think Lupus is a walk in the park! Stay strong people! WE GOT THIS!!! Bless you all! :-)

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A stick of dynamite comes to mind lol! Sorry , very dry sense of humour!

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I agree with you guys information is power and idd take up paul's offer for more info, but i would also suggest that on the lupus uk website you can buy books they are not badly priced the reason is i have found questions will pop up and rather than stewing on it you can look it up,

lupus is different for everyone and there is so much to take in and it might help with your family they do a brill book called 100 questions which i gave my mum because it takes a while for them to digest whats happening to you aswell.

good luck and if you are not happy with you doc reseach and ask your gp to refer for a second opion it might not be quick but you will need to have a good relationship with them for the future..

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I wasnt diagnosed until I was 49 but my rheumy said that I would have had it for years, I had 3 unexplained miscarriages in my twenties but no-one ever made the connection. However I went on to have my beautiful daughter and she has brought us much joy. She is now 30 and I am a granny now. I would seek a further opinion on this. I am also the only one in my family to have this. Take care.x

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Hi Mitchel,

I was diagnosed at 17, I too was told that I would never have children but this was by two trainee african docs working in Walton Neurological hospital. It took a few years for me to accept my condition and for my rheumatologist to get my meds right however I now have two very healthy boys :) I was found to have appp in the first pregnancy and so started to take low dose aspirin and have remained on this ever since and during my second pregnancy I was advised to inject daily with Clexane which was not a problem, the only discomfort was the bruising but thoroughly worthwhile. I had my second son at 33weeks due to my liver not functioning correctly which I was told could have been cholestasis or the Azathioprine but the docs took great care of me and my son who returned home after 3 weeks in scubu.

Hang on in there, Lots of Lupus love xxx

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thanks everone for the nice comments i'm just glad to know that there are other people out there for surport ..best wishes michelle xx

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I have Lupus and was diagnosed after I had my children. If you get intouch with either St Thomas Hospital Lupus trust or Lupus UK they will give you information and whom ever told you not to have children when you have Lupus needs to go back to the books as Lupus does not stop having babies with or without problems. I have been told that in my hereditory family medical history out of 37 people only 6 have Problems linked with lupus.

My suggestion is if you are healthy and your Lupus is under control then get pregnant and enjoy. Obviously seek medical addvise and I personally would ask for a second oppinion.

Good luck and best wishes Helen

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Hi, I was diagnosed with Lupus and APS 17 years ago after losing my first child and never thought I would have children. However, I have a wonderful husband who has supported me throughout the bad times and the good times. I have 2 wonderful children who are incredibly bright. My son is 16, top of his clas and wants to study law. I have just come back from my daughters parents evening and she is also top of her class and wants to be a vet. So you see you do not have everything in life, but what you do have is worth fighting for and to have my children I would go through all the months in hospital and all the problems all over again. They were worth it!

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Hi i had 2 healthy children well before my diagnosis. They are now 27 and 29 and i am 47. I was diagnosed with Lupus in 2000 at the age of 35, lost my kidney function at 40 and had a very successfull transplant at age 41. I have 4 grandchildren to date, all of whom are healthy as are my son and daughter still. There doesn't seem to be anyone else with Lupus in the family. I can't see why you cant have children and you do need to investigate further. Everyones Lupus is different, mine is kidney and eye involvement, i think thats it, i do get tired yes but i'm more than capable of going to work afternoons and evenings my best times of day. I'm not a good sleeper so tend to catch up in the mornings. Don't give up, don't let Lupus get you, you control it! I don't understand Lupus 12 years on, i just know if i have a blood test then the results are always negative and the complements, (whatever they are?) are in normal range. Maybe ignorance is bliss, having too much negative info can only serve to drag you down!

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Hi i have had lupus for 8 years now took 2 years of lots of different tests to finally work out what was wrong with me i was told it would be hard for me to fall for pregnant if i ever wanted to start a family and i would have a high precentage change of miscarriage i fell pregnant 3 years into having lupus and i had weekly check ups and was put on blood thinning injections etc to make sure baby was kept healthy from 30 weeks i had scans twice a week due to my baby not putting weigh on and they decided at 34 weeks she would be safer to be born i had her by emergency section at 34 weeks and she was born weighing 3lb 14oz with no health problems at all she spend 2 weeks in scubu in the hospital and she after 2 weeks she weighed 5lb 1oz she was allowed home she is now 3 years of age and the most perfect healthy little girl she keeps me going everyday though this horrible illness :) soo dont give up!

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I am the only one in my family too. I was 16 when i got told i had lupus and that i would not have any children but i have 5 lovely children. When i get ill i get ill but all ways pull though quick. I have a 4 month old baby and i feel better more than i have done in 11 years when i had my youngest son i find i keep my self going just for the children. I know not to count my chickens as i know it can change very quick.

Don't give up i get up every day for my husband and children

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Hi have ad lupus for 12 yrs and i was the only one in my family, its just bad luck that it had to be you my family worry about me but what can they do, they are doing a resarch into why i have got it and no esle in my family as the collected blood sample from all my family members still can not find why just me that has got it. Keep your chin up, dont let it worry you, always be thank full for getting through the day good luck

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i have lupus, APS, raynauds, osteo and i had my little one after four losses and i was 43!!! dont listen to them they are not always right x x

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