Young males with lupus

[nickyc]

Hi, my son was diagnosed with lupus 12 months ago when he was almost seventeen. He was lucky in one respect because he got the diagnosis in about 4 weeks of becoming ill. His main problem is kidney disease which was how he was diagnosed so quickly. He has been in hospital 4 times since with pericarditis, although some doctors dispute this with one even suggesting it was all in his head! He has had this pain so many times now that I think he knows what it is.

It is very frustrating because you sometimes get the impression that the doctors do not know enough about lupus. Fortunately he also sees a rheumatologist who runs a lupus clinic in Liverpool. We live on the other side of the Mersey and tend to visit the local hospital where he is looked after for his kidney problems. If the rheumatologist was a bit closer I would consider transfering all care over to him.

My son is finding it difficult to come to terms with as it has changed his life. He had just started a job when he became ill and because he was still on a trial they did not keep his job open to him until he was better. He now has a seasonal job with the possibility of a permanent position, but he has now been off for 2 weeks and was due to go back today but was taken back into hospital on Sunday. It is now going to be next week or the week after before he is well enough to return. Are they really going to offer him a permanent job when it is a distinct possibility he will be off sick again?

Are there any young males he could chat to? I think it may help him to know other poeple have to take the same medication (which he did not take for a few months thinking he did not need it), and have the same problems coming to terms with their condition.

Many thanks
nickyc

[Tom]

Welcome nickyc,

Lupus is most often found in women, but there are a few men on here like me. I'm pretty sure my symptoms started when I was a teen myself but didn't become serious until my late 20's. It really is a good thing to find Lupus early but it's not until the effects show up that we are usually diagnosed.

I can understand your son's frustration, in fact most of here can. Accepting that we have this disease and that our life has to change is a hard thing to come to terms with, especially for the very young. Treatment is key for us and many can live a fairly normal life. Although he has kidney involvement, there is a good chance it can be controlled and keep further damage from happening. What meds does he take?

Lupus is only about 10% gender specific (Just my guess) as it still effects us in almost the same ways. I would be happy to chat with your son if he would like a man to talk with. Just send me a PM so we can get together. There is also a section here for young adults which he can post and a chat room where he can talk to others with Lupus anytime. He needs to know that he's not alone with this and we are here if he has questions.

You are always welcome too as I'm sure you have questions yourself. We have a few mom's that come on the forums and into chat to talk about lupus and get answers to questions just as you have. We know it's not easy for you either and understanding what Lupus is helps a lot. It can be a complicated disease in how it effects us.

You both take care :)

[mooks]

heya, im know im not a guy but i am only 20 and have just been diagnosed myself. i too had a new job at the time of falling sick and lost it because of my absenses. now i am trying to find a new one but i will have to lie about my health to get one i think! It is really hard having lupus at any age, but when all your friends are clubbing every night and out in the sun havinf adventures every day its awful. My friends try to be sympathetic but they tend to be a little less understanding than older friends i have....i guess its harder as lupus is a fairly invisible disease. Also it is kind of embarrassing having to behave like a 60 yr old and stay out the sun and nap twice a day and not drink!! please tell your son that he can pm me and ill give him my msn anytime he fancies a chat. xxxxxxxxxxxxxxxxxxxxxx

[nickyc]

Thanks to Tom and Mooks for their replies to my message, I will pass these on to my son, Leigh. To Toms question re-medication, Leigh takes Prednisolone and Mycophenolate Mofetil plus some others to counteract the side effects of these and iron supplements to help with his aneamia.

I do hope you get a job soon Mooks and I am sure my son (who has lots of female friends!) will not mind talking to a female. He actually uses his illness to get sympathy off the girls, in fact some were in tears when he was first ill! I think they have got wise to him now.

Thank you both again for your support.

nickyc