Woman with rare skin condition reveals it feels like she’s being burned with a hot iron 

A woman with a rare skin condition, which causes open wounds which leak pus, says it feels like she is being burned with a hot iron.

Elise Axon, 25, from Dorset, appears on Discovery show The Bad Skin Clinic next week, to seek treatment for Hidradenitis Suppurativa – a rare genetic skin condition that affects just one percent of the UK population.

The condition means that she gets boil-like lumps on her legs and under her arms. At its most painful, she said that it can feel like having ‘golf balls’ under her arms, while pus and blood clots can come out of the open wounds. 

Elise exhausted all the treatments she thought were possible for her condition, including surgery. Next week she’ll appear on the show where Dr Emma Craythorne looks at how they can solve her problem.

Speaking exclusively to Femail she said: ‘It started when I was seven so I was quite  young – but I don’t remember ever not having it. I remember getting the odd boil or lump on my leg – but it got worse as I got older.

Her mother has the the same condition, so she was able to tell her what to expect straight away.

‘Medically it’s not hereditary but I have it from both sides of my family – my mum has it and so does my dad’s sister, and my cousins all on my mum’s side,’ she said.

Talking about her condition she said there are three stages, which have varied throughout her life.   

‘At stage one you get the odd boil, I use that term loosely – it’s like a lesion – this may come up and then go away.  With stage two you may have a few in one go.

‘Stage three is the worst, where you have a lot of bumps and open wounds – in one or more than one area.

As she got older it gradually spread from her legs to her arms  – and the pain became unbearable.

‘When its under my arms it feels like having a golf ball under them – trying to shut your armpit really hurts. It can also feel like a hot iron or a sharp stabbing pain – it’s what I imagine nerve pain to be like.

‘Sometimes you catch one on the side of your leg and it makes you double over in agony – creating shooting pains that make you feel sick – it takes your breath away.’

She also told Fabulous magazine: ‘When some of the lumps drain, you think it’s never going to end, there’s so much fluid coming out. Some can be very pussy, sometimes you get blood clots coming out, they can be light, dark, orange, they’re so varied.

‘The pus could drain through your clothes easily, depending on the size. 

When it comes to treatments for it she said she’s tried everything: ‘I’ve tried antibiotics, acne treatments, tropical lotions – nothing helped.

‘I even had surgery – where they removed the areas affected, but it just came back worse.’

Talking about the affects of it she said: ‘It makes me very tired. But I’m lucky that I’m quite a positive person and I don’t let my condition define who I am – so I just get on with it.

‘But I do have to be careful, I can’t wear white linen trousers, in case they start to bleed. But if I want to wear a strapless top then I will – its only going to bother someone else and not me.

She tries to stay positive about her condition, but revealed the Fabulous that some people see it as disgusting and recounted a story about how they burst under her arms one day, when she was out with friends, but a stranger thought it was ‘disgusting’. 

Talking about her time on the show she said: ‘Dr Emma is amazing, she is a book of knowledge, I thought I knew my condition well but she knew so much.

‘She started me on a treatment which suppresses parts of your immune system and  is used for lots of inflammatory diseases – so I inject myself fortnightly.

‘It made a massive improvement within a few days – my arms look a lot less inflamed and I had a really good response straight away. 

‘I wouldn’t want to come off it now as its made life that little bit easier for me – if I can keep it at this level then I’ll be happy. I could potentially be on it for the rest of my life – if it carries on working.’  

Elise has recently set up an Instagram account documenting her journey through living with HS and receiving her treatment on the show. 

She said: ‘I set it up in the hope that it might be a source of inspiration and comfort for other HS sufferers, and to help raise awareness around the condition.’

 

Source link

0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *