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Early days

Hi I am a mum to a 14 year old son who was diagnosed in September after a year of being ill and finally had 1200ml of pericardial fluid drained.He is finding this so tough , his life has changed so much.He was fit and sporty and now barely has the strength to be out of bed longer than an hour or so.He is often fast asleep by 6 pm .It is so sad to watch .Wondered if anyone had experience with a teenager with SLE.He is unable to attend school , its really affected his life.Any contact appreciated

4 Replies

Hi my daughter was diagnosed with lupus when she was 15yrs old she took it bad she still won't accept it now and she is 21yrs old she dont like talkin about it with friends only close family and friends know, she gets on with life the best way she knows how its very hard for a parent to come to terms with them havin a child that was once doin everythin like sport to them not bein able to, there is s site on facebook called lupus is real im on there and the people on there have lupus and Brill very understandin the owner of it is dawn, I go on it too, or if you would like to chat to me send me a message back lookforward to hearin from you x


I don't have a teenage child with lupus, but I think that I may have been suffering from the symptoms when I was a teenager. I was only diagnosed 9 years ago, but I can remember being terribly tired at school, with hair loss and other symptoms that are now tell-tale signs. I too, had previously been fit and healthy and despite a careful diet and exercise, gained enormous amounts of weight. I have no idea how much 1200ml is, but when they drained fluid off of me, I was six and half stone lighter than when I went in to hospital.

I noticed that you sign yourself "Carlow1"; are you from Carlow in Eire? My family are from there.


I dont have a child but Ive got myself fitt enough to go back to work 4 times and i have heart and lung probs so dont give up hope when he feels abit fitter maybe use a xbox /wii to do small amount of excerse to increase your fitness.

Hopefully the school will help you with work but encourage him to email friends to keep in contact the worse thing about this illness is you feel alone because its exhausting talking to friends and for me the chance of picking up an infection. The long term view theres no reason why he cant have a normal life but maybe look towards a job which he could do at home if he isnt well or something which is not to physical that through good and bad time he can continue... im 41 and it does mean i enjoy small things because i get to slow done and plan fun things, like watch a film and eat popcorn etc because when your ill like this you cant see past it so have fun things which breaks up the day... good luck i know my husband has a tough time watching me go through this.


Hi Cariow1,

We have an information pack that we could send out to you if you'd like. We have a special book aimed specifically at young people with lupus that I could send with it. If you'd like me to send one, just send me a private message with your name and address.




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