[mum86]

Hi - I'm not sure were to start - My son has lupus and all the information I read are only for women.. Are there any mothers out there with similar situations - I need somebody to talk to and advice gladly received...

 

[pennylp]

Hi there,

Welcome to the site... There are a lot of women on the site true, because lupus affects more women than men... But we do have men on our site... ... This is a support site for men , women, and family of people with lupus and also for people that are looking for diagnosis...
Feel free to post any concerns you have or questions... I am sure you will be satisfied with the response you get... There are mothers on the site with children who have lupus... You didn't say how old your son is...
So Please post and we will try and help you as much as we can...

Welcome again..

Love Penny

 

[Maia]

Welcome to the site but sorry for what brings you here of course.... (((hugs)))

There is a pediatric section down below in which you can read about other moms with younger children with lupus (if your son is young). We also have a men's section if your son is an adult. Lupus in men is very similar to lupus in women, with a few less concerns about the obstetric side of things of course!

It's hard having lupus yourself, but I imagine it has to be worse to see your child suffering, however old they are. Take care and please ask any specific questions you may have.

 

[lazylegs]

Hi Mum86

I just wanted to say hi and welcome you to the site. Even though the information you find here is not specific for children I am sure you will find it helpful. At least you will have some idea if the things your son is experiencing are from Lupus or not.

Take care,
Lazylegs

 

[LolaLola]

Hello Mum 86,
You and your Son both need support.Tell us what we can do.
x Lola

I have 20 year old Son and 17 year old Daughter. Daughter has Lupus so do I.

 

[mum86]

Hi - thanks so much for replies - they do really mean alot to me.. my son is 23yrs - we feel so lost and have so many questions which we are not getting any answers - he was only discharged from hospital on Wednesday and its only been a couple of days - but as any parent with a sick child you want instant answers... but you know in reality he needs time to recuperate and get well again.. we have had our fair share of cries and hugs in the last couple of days.. but hey... we think it is better to be happy than sad.. face up to the facts and beat it!!

 

[mum86]

Hello LolaLola - thanks for the welcome.. must admit.. have found this all really strange.. talking to complete strangers.. but it just shows there are people out there who are willing to take the time to reply to my message.. it is really comforting!

 

[mum86]

Hello Lazylegs - I will gladly accept any advice given to me...it's just really hard to take in everthing all at once - so overwhelmed with this - we have arranged to meet with the docs in hosp to discuss lupus in futher detail.. I just hope that appointment comes soon..

take care.. speak soon..x

 

[mum86]

Maria - thank you for your reply - were can I find more info about men with lupus - my son is 23yrs old.. my son seems to think he is the only male in uk who has lupus.. it's just so frightening and hard to come to terms with.. We have cried so much the last couple of days.. we've got so many ideas of places to approach for info but because we have no sense of direction we are just working ourselves up and obviously that makes the problem seem even bigger...any help and guidance, much appreciated....xx

 

[mum86]

Hi Pennylp - after another day of tears.. I find all these replies really comforting to read, it makes me realise that I only need to ask for help and advice and sure enough.. I have had a couple of replies - these have really helped me.. I know in the days, months or even years to come there will be more tears.. I just hope they are tears of happiness...xx

 

[fenrus]

I'm a 25/m, with Lupus for 3 years. I live at home, so I've been on the receiving end of a worrying/clingy mom, haha. It is often overwhelming that she continues to analyze or ponder things she might have done differently that may have led to my condition. But try not to stress too much about it, others stressing around me stresses me out even more.

and for the record, I used to be super fit and I always lived a healthy eating lifestyle, I was like the last person you would expect to get sick. So it was quite a shock for people around me.

 

[mum86]

Fenanus - thanks so much for replying to me - can you tell me how you are now with lupus? I feel that it is really important for me and my son to speak to people who have lupus, especially men, any more messages from you, gratefully received.. do you work? study?

Hope you are well?

 

[fenrus]

After my first major flare, I was pretty much bed ridden for 2 months. But just kept on looking for the small improvements, take it one day at a time. And the months after I still took it easy. Took a job as a video game tester for the summer as my first real test back into "the routine". Then went back to finish my last year of school and got a job shortly after and working till today!

I would say I have been very healthy for these past two years, on low medications for the most part, regaining my former active lifestyle. Unfortunately, I'm currently experiencing a bit of a flare up, (missed two weeks of work). But I'm feeling alright, maybe it's because of the 60mg/day of Prednisone I've been taking for a month. My blood tests have shown to be a bit anemic for quite a while though, hoping that will improve. But I'm in good spirits and eager to regain my fitness level.

 

[mum86]

Fenrus - thanks for giving us an insight on how lupus has affected you as a male - really appreciate - hope you maintain a good level of good health and continue to improve... my son has improved slightly over the days since he has been discharged from hospital - we are taking a day at a time - we have a hospital appointment next week so we can hopefully get a better idea on my son's condition. take care.. and look after yourself..

thanks..