Lupus in children 

Find out how lupus (an autoimmune condition) affects children. In this video, Eve's story describes how she was diagnosed with lupus at the age of 17.

Learn about the causes of lupus

Transcript of Lupus in children

Childhood lupus is a condition where the body's immune system reacts,

for some reason, against its own tissues.

Up to 20% of people present in childhood,

but it can affect them in many different ways.

Some children will have skin or joint involvement.

In others, it may affect a major organ, so they could have kidney disease,

it can affect their neurological system,

so it can affect their brain, or how their nerves work.

In others, it can affect their heart or lungs.

But the important thing is for each child to know how it is affecting them

so that particular and specific treatment can be given.

I was diagnosed with arthritis when I was eight,

and then, at the age of 17, I was diagnosed with lupus.

Lupus, unfortunately, is potentially a fatal disease,

so, in young people or children who are not diagnosed,

in a very aggressive form,

they can become very unwell and, unfortunately,

sometimes children can die of lupus if they are not diagnosed or treated.

That, thankfully, now is very unusual,

but even so, children can present to hospital very unwell

where even the doctors don't initially think about lupus,

they don't think children can get lupus sometimes.

Therefore, it may take a while before they diagnose it.

It was my fatigue that, throughout my experience of lupus,

has been my main issue.

I did have slight lung problems, a bit of struggle when I was breathing deeply.

I had a bit of pain which was unusual for me.

And just my mood as well... I felt low quite a lot of the time,

and wasn't able to pick myself up from that easily.

I think, when you say to someone, "I'm feeling a bit tired,"

everyone says, "Yes, me too."

But, it's a different level, it's that your brain starts to kind of shut down,

you're not thinking quite logically, you might even feel a bit dizzy.

You just want to be horizontal, you just want to lie down.

(Beresford) Prompt diagnosis and starting treatment

is very important in lupus.

The reason for that is that we know that if we switch the inflammation off,

there is less chance of causing damage to those areas of the body affected.

Therefore, in the long term the outcome for the child or young person is better.

I think the support of family and friends is very important

when you're first diagnosed.

Just to have someone to talk to and to keep active with,

to make sure that you have things to look forward to,

and not to dwell on the bad aspects of the disease.

My school was really supportive with my lupus and my arthritis.

We instantly told them how I was going to cope with things,

and that I might need extended deadlines.

The exam board was very generous.

You get extra time, you just have to tell people,

let them know what's going on and keep them updated, really.

There are some very important treatments in lupus.

They consist of a team of people who are there to help.

This is a multi-disciplinary team of professionals who are very experienced

in helping with all the problems that a patient with lupus might have.

There are some very important medications,

which depend on the kind of lupus that you have.

They often involve steroid medicines, at least initially.

Then a range of treatments that affect the body's immune system,

and therefore suppress the inflammation that's causing the lupus.

At first, I did feel like my life was going to be completely different

and that I'd have to not do the things I want to do

and my friends will be doing them and going off doing different things to me.

I stopped and thought, "Why?"

"Why can't I go off down town this weekend?"

Then, I thought, "I can, I just have to think it through."

You have to plan a lot with lupus, you have to think,

"I've got a morning lecture, I have to get up at nine, I finish at 11."

Then, if I want to do something in the evening,

I'll have a nap after lunch from two until four, get up, get ready,

and then be able to have fun with my friends in the evening.

It's just structuring your day and being able to think ahead.

If a child is diagnosed with lupus,

there is the initial phase when they are starting treatment.

There can be a lot to take on board.

But, with time and right treatments, and particularly the right care,

we would expect them

to be really managing to live as normal and active a life as possible.

That would be going back to school, having a social life, doing games

and looking towards the future.

Life is going to be more of a challenge with lupus, you have to realise that,

and you do have to manage your life more and become more organised.

But, I think that changes you as a person, it makes you mature quicker,

it makes you stronger and more understanding with other people.

It is a challenge, but it's possible.


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