Jokiva Rivers suffers from genetic condition that causes severe blisters

tunisante January 14, 2017

Jokiva Rivers started to notice rashes forming on her face when she was just 18
Doctors were initially unsure why and mistakenly diagnosed her with eczema
But her condition worsened, causing her to struggle to eat, drink and sleep
Medical tests revealed she had lupus – of which sunlight can trigger blisters

Stephen Matthews For Mailonline

Published:
05:29 EST, 13 January 2017

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Updated:
06:13 EST, 13 January 2017

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A 22-year-old woman left with severe blisters across her face has been told it’s because she’s allergic to sunlight.

Jokiva Rivers started to notice blisters forming across her cheeks and necks when she was 18 – but her doctors were unsure why.

But her illness worsened and the red patches began to spread, causing her to struggle to eat, drink and sleep.

Having consulted her doctors once more just months later, she underwent medical tests to determine what was wrong.

She was told she was suffering from lupus – a genetic condition which can trigger rashes following exposure to the sun.

It means that if she ever wants to leave the house then she must cover up or wear sun cream to prevent an outbreak.

Jokiva Rivers, 22, from New Orleans, suffers from lupus – a genetic condition which can trigger rashes following exposure to the sun

Mrs Rivers, from New Orleans, said: ‘I was originally misdiagnosed with eczema after I started developing rashes at 18.

‘But the flare ups started to become more regular, my face was so red and covered in angry blisters that I didn’t feel confident enough to go outside.

‘A few months later I had to go to hospital due to kidney failure, then I was informed that I had lupus and things just went downhill from there.

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‘I struggled to eat, drink, walk, and even sleep. My bed would be covered in sweat every morning and my skin became so red and blistered.’

Lupus causes skin rashes across the body and can be life-threatening in some cases.

It is caused by the immune system beginning to attack and inflame healthy cells, tissue and organs, and leaves many vulnerable to sunlight.

It means that if she ever wants to leave the house then she must cover up or wear sun cream to prevent an outbreak

She now takes 21 pills each day to prevent an outbreak and her husband, Howard, 23, has taken on the role of her carer

After being diagnosed with the condition, she was told that she would be plagued with it for the rest of life.

Desperate for treatment, she had chemotherapy to try and help her immune system – but it is unsure what effect it had on her body.

She now takes 21 pills each day to prevent an outbreak and her husband, Howard, 23, has taken on the role of her carer.

Mrs Rivers added: ‘I have been resting and looking after myself loads in the past year as I’m desperate to have a baby with my husband.

WHAT IS LUPUS?

Lupus causes skin rashes across the body and can be life-threatening in some cases.

Often blisters appear after exposure to sunlight – known as photosensitive rashes, as patients are more vulnerable to ultraviolet waves.

These waves damage cells in the skin, known as keratinocytes, causing them to die.

In healthy people, these dead cells are cleared away quickly and any inflammation caused is short-lived.

But in lupus patients, skin cells are often more sensitive to sun-induced damage, preventing the dead cells from being cleared as quickly.

Some sufferers even report feeling poorly immediately after going outside, regardless of how long for.

Source: Lupus Site

‘He’s been so good to me and there hasn’t been any strain on our relationship at all.

‘Even though due to my illness I’ve been unable to be affectionate, he has still stuck by me and supported me all the way through.

‘I’ve lost three stone in the past year and my skin now looks so much better, every day is still a constant struggle but if it wasn’t for Howard I could not have got through it.

‘I’m desperate to recover enough so that I can work, it’s my dream to be a nurse practitioner and that’s what I wanted to be at school.’

The condition has even caused her social life to be affected, often preventing her from going out with friends.

Initially unhappy with her, her friends soon discovered the true impact lupus was causing.

Mrs Rivers has since joined a lupus support group so that she can speak to others in a similar position.

She said: ‘I like to give advice to people who also suffer from a bad case of the disease, it makes me feel good to help others in the similar position.

‘We reassure and help each other fight this awful condition.’

She began to notice blisters forming across her cheeks and necks when she was 18 – but her doctors were unsure why. But her illness worsened and the red patches began to spread, causing her to struggle to eat, drink and sleep