A YOUNG mum is determined to raise awareness of a little-known autoimmune disease that’s treated with chemotherapy - and is so rare that most doctors don’t even know about it.

Danielle Seignot,25, was diagnosed with Behçet's disease in April last year, after struggling with the symptoms her whole life.

Behçet's is a rare and poorly understood condition that causes inflammation of the blood vessels and tissues.

The NHS say that diagnosing the disease is incredibly difficult because the wide-ranging symptoms can be shared with a number of other conditions.

Only 2,000 cases have been diagnosed in the UK. In severe cases there’s a risk of strokes and permanent vision loss.

There is no cure, so doctors are left to treat the individual symptoms, using methods that have their own side-effects.

For Ms Seignot, Behçet's disease means she suffers from ulcers, rheumatoid arthritis and extreme fatigue.

South Wales Argus:

(Danielle Seignot with her two-year-old son Isaac)

In the past she has also had seizures which doctors are now linking to the disorder.

With dreams of completing a PGCE and becoming a music teacher, Ms Seignot faces an uncertain future with a condition that can flare up at any time, leaving her totally incapacitated.

“I was always a sickly child, from about eight-months-old,” she told the South Wales Argus.

“Doctors told my mother at the time that I had ‘bugs in the blood’.”

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Ms Seignot was finally diagnosed by chance, after visiting a doctor in Ringland last April who had seen the rare disease before.

“I was really lucky to find a doctor who had knowledge of it.

“I’ve had major ulcers since I was young, and I thought the arthritis was just aches and pains.

“Everyone says they feel tired and sluggish. I never thought I was different from anybody else.

“But it just kept getting worse, especially during and after my pregnancy. They just didn’t know what was wrong with me.

“I cried with relief when I was diagnosed, when I found out that there was actually something wrong with me – that it wasn’t just in my head.”

South Wales Argus:

(Ms Seignot says she struggles with not being able to give Isaac a "normal family life")

The symptoms often mean Ms Seignot is unable to leave the house, and she struggles with the impact it’s having on her two-year-old son.

“It’s really hard. I want to take him out and let him experience things," she said.

“But the pain from the ulcers can be unbearable, and the fatigue is indescribable. It's like being hit by a bus.”

Ms Seignot takes Methotrexate – a chemotherapy drug – once a week, but the effects leave her sick for days.

She also takes folic acid to combat the associated hair loss, and has been prescribed gout medicine to try and treat the ulcers.

But, she added, rather than helping some medicines seemed to be causing more ulcers.

“Without my partner Ifan and my family, I wouldn’t be able to cope,” said Ms Seignot.

South Wales Argus:

(Ms Seignot is raising money for Behcet's UK by cutting off 12 inches of her hair)

Her partner Ifan Lloyd, 27, explained that the condition has made normal life very difficult for the young family.

“It’s really hard,” he said.

“We can’t just go out and do things like a normal family. There’s so much to think about in terms of having a two-year-old with you, and working out how Danielle is going to cope.

“There’s a definite lack of understanding too, even with some doctors.

“You can see in their eyes that they think we’ve read about it online and are just making it up.”

With Ms Seignott unable to work, the family resisted asking for help until last November, when they were persuaded to apply for PIP.

The application was turned down.

“Basically I was honest with them,” said Ms Seignot.

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“I can walk 200 yards unaided, that’s not a problem. The problem is that the fatigue that will hit me later that day, or the next day. I’ll be completely exhausted and in severe pain for a while.

“It just seems like there’s no understanding and no support available for this debilitating disease.”

To raise awareness of the disease, Ms Seignot is planning to cut off 12 inches of her hair tomorrow (March 1) to donate to the Little Princess Trust.

She is also fundraising, and you can donate to Behçet's UK on her Go Fund Me page.

There is also a Facebook support page for anyone who thinks they might have the disease, and advice is available on the NHS website.