A woman has spoken about how a rare disorder left her in agony and led to her needing to learn to walk again.

Alicia Cawthorne from Chatham has spent hours doubled over in pain and months in hospital dealing with the effects of porphyria.

The porphyrias are a group of relatively rare genetic disorders which occur when substances called porphyrins build up, negatively affecting the skin or nervous system.

Alicia has Acute Intermittent Porphyria which is estimated to affect 1 in 10,000 people.

Alicia, who is now 25, was first diagnosed when she was 19.

The Old Road resident said: "I would explain it as, in people's blood there's ABCD, but in my liver, it only makes ACD, it misses B.

"I call him Fred. When he realises he is missing, it attacks my immune system, nerve system and muscles.

"Every single attack I have had I have been in hospital for over two weeks up to six months."

One such attack left Alicia in a state where her legs were paralysed, during which she was moved from Medway Maritime Hospital in Gillingham up to King's College.

She said: "My body was weak from having all the previous attacks and it attacked my legs.

"I was paralysed for a good three or four months. They helped me through and helped me get a minimum amount of movement in my legs."

Alicia – who works doing admin for Medway Sport – worked her way through progressing from crutches to help her get around, moving down to using a walking stick.

She now walks unaided but keeps crutches in her car if she feels tired when she is out and about.

In the last six years, Alicia has has 22 attacks, the first of which happened in 2014.

She said: "It all started because I caught a simple chest infection so like everyone else I went to my doctors to ask for some antibiotics but what we didn’t know was that porphyria patients are allergic to many medications.

"So I started these antibiotics and within two days I started getting the symptoms of tummy pains, sickness, fatigue and confusion but being the stubborn person I am, I continued to work and carry on with my life.

"While I was at work I started having problems with my breathing and the pain in my tummy was crippling so my employers rang my mum and the ambulance and before I knew it I was getting rushed into hospital.

"I can’t really recall what happened in A&E or what happened for the next 10 days.

"According to my family, it was most terrifying thing they’ve ever seen and I wouldn’t stop crying in pain and I was very reluctant to allow people to touch me.

"I wouldn’t eat, or sleep. I just wanted the pain to stop. I didn’t want to be here. I wanted it all to end, however that end may be.

"I was tested for cancer, for countless amounts of infection, for a hernia but they all came back clear."

Alicia and her family discovered her grandmother had porphyria and a test was organised which came back positive.

She says the worldwide awareness week which began on Saturday, April 18 and ends on Saturday, April 25, is really important to her because she often comes across doctors who don't know about it.

"Our aim is trying to raise awareness and raise money. For me it's really important; I have got a younger sister who's got it so I don't want her to suffer from it."

Alicia has become an ambassador for Snow Companies which shares the stories of people with certain conditions and she also helps British Porphyria Association.

She says she often comes across doctors who aren't aware of the condition.

"No one knows what it is so no one helps; we need to get the help we are entitled to," she explained.

"My life consists of having weekly infusions of something called haem arginate to help minimise my symptoms and attacks.

"I have 50% good days and 50% bad days. I’m very good now at listening to my body and knowing when to stop and rest.

"Life isn’t easy with porphyria and it’s really hard. We are different and we can’t always do the things we want to do."

If you would like to donate to the British Porphyria Association visit the JustGiving page, which also has activities to get involved with throughout the week.

To keep up-to-date with all the latest developments with your local hospitals and other health stories, click here.

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