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Dublin: 17 °C Wednesday 5 August, 2020
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Living with Lupus: Attacked by your own immune system

October is Lupus Awareness Month.

Source: Lupus Group Ireland/YouTube

THOUSANDS OF PEOPLE in Ireland suffer from Lupus, but many people know very little about the condition.

Lupus Group Ireland is trying to change that with a new information video released to mark Lupus Awareness Month.

‘The Face of Lupus’ features people discussing their own experience of having the condition, where the immune system mistakenly attacks healthy tissue.

There are two main types of Lupus: systemic lupus erythematosus (SLE) and discoid lupus erythematosus (DLE).

SLE is more serious and usually relates to a person’s joints, skin and internal organs, while DLE only affects the skin. People can have one or both forms.

Symptoms include fatigue, rashes, swollen glands, migraines and joint pain. Many patients will also have skin lesions at some point.

Lupus is often misdiagnosed as symptoms may have multiple other explanations.

Treatment

Jessica O’Bryan is one of the volunteers who run Lupus Group Ireland. The 29-year-old legal assistant was diagnosed with the condition three years ago.

After Lupus started to affect her kidneys earlier this year, Jessica underwent a series of chemotherapy from April-July.

I was very ill, I wasn’t able to hold down water. That’s when the doctors became concerned about my kidneys.

She had previously taken immuno-suppressants to help control her condition. This type of medication is not without its own risks and can lead to an increased chance of contracting infections.

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Jessica told TheJournal.ie that chemo might not be a long-term solution for her as it may affect her chances of conceiving.

She got married last year and said “it’s just a matter of time” before she wants to start a family.

It’s a waiting game to see how it goes.

Her latest ‘flare’ of Lupus has been ongoing since January. Doctors at St Vincent’s Hospital in Dublin are monitoring her condition.

The majority of Lupus patients will have some kidney damage, but only a small number develop kidney disease severe enough to require treatment such as dialysis.

What causes it?

The underlying cause of Lupus is not fully known, but an attack can be triggered by stress or exposure to sunlight. It’s thought hormones and genetics also play a role.

Jessica has very sensitive skin and has to wear factor 50 sunscreen, even on overcast days.

It’s like sea sickness. It’s like you’re constantly having the flu but you don’t … you’re so tired. You know when you have the flu and you’re on the couch and you can’t move? Then add joint pain and migraines.

There is no database for Lupus in Ireland, but it is thought that somewhere in the region of 4,000 people have the condition. The vast majority of sufferers are women aged 15-45 years.

During October, Lupus Group Ireland is encouraging people to ‘paint it purple’ and wear the colour to show their support for people with the condition.

More information on Lupus Group Ireland’s work, which is done on a voluntary basis, can be found on their website.

Read: ‘It’s like someone beating you up’: The invisible illness no one’s talking about

Read: “People are being left to rot”: Rare disease sufferers feel let down by health service

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About the author:

Órla Ryan

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