A teaching assistant who was diagnosed with a rare and incurable disease after she went to the doctors complaining of arm pains fears it will kill her "at any moment".
Abbey Parker, from Willington, Derby, was diagnosed with Behcet's disease - a condition which inflames blood vessels and tissues - after she began getting pains in her arms, chest and kidneys.
The 25-year-old left doctors stumped medics when she visited the Royal Derby hospital in November last year, only to be diagnosed with heart weakness after multiple tests.
She received the shocking news from Dr Robert Berg who she has since thanked for "saving her life", Derbyshire Live reports.
Speaking about her experience, Abbey said: "I got admitted for the kidney infection because I needed an intravenous drip and they kept me in for some more tests.
"But on one of the rounds of testing there was a bit of miscommunication - but it worked in my favour.
"The doctors asked me if it hurt anywhere and I said it hurt to breathe, but I was referring to my kidney - he thought I meant my chest.
"They sent for further CT scans on my chest and found the aneurysm (tissue weakness) on my heart.
"I was there for 17 days, my mouth was full of ulcers and I had a lump under my armpit, which turned out to be an aneurysm as well.
"It's such a rare disease, normally no one would think about it being that.
"It was my second kidney infection in such a short period of time so I think that was a bit of a red flag."
Boyfriend Jack Bates, 25, admitted he thinks without the shock diagnosis his girlfriend wouldn't have made it to Christmas.
The electrician has since decided to raise money for Dr Berg's research department with a three peaks challenge.
He added: "Her condition is a lot to take in some days, having to take some time off work to look after her, but it’s scary.
"The fundraiser is something I’d been wanting to do for a while, to try and raise money for Dr Berg’s research department and Behcet's UK as well.
"Without Dr Berg’s diagnosis in November 2021, Christmas 2021 would have been Abbey’s last."
After receiving her diagnosis Abbey was placed on chemotherapy and steroid treatments to prevent the inflammation and will need heart surgery on a 50mm split which is leaking fluid.
The 25-year-old hopes to be a mum one day and in an attempt to prevent the disease affecting her fertility she is having injections in an attempt to save her eggs.
She added: "I didn’t realise how serious it was, which was a good thing, but also when they came in to say I had to start chemotherapy and might not be able to have children, it was quite scary.
"I just thought I had a kidney infection but then they started talking about heart surgery and all this, it’s still strange now.
"If I didn’t go in, they thought I was going to die, so it’s a good thing that I got a diagnosis.
"I’m not religious or anything like that but I do think someone was looking out for me, to go in with a kidney infection and come out with this.
"I had to leave my job because they said I couldn’t work for 32 weeks, which is almost a whole year, what was I supposed to do?
"I think also having an additional barrier of maybe not having children, I meant to be in the prime of my life."
She admitted to feeling relieved to know the reason for her symptoms.
Abbey added: "To finally know what was causing my symptoms, I didn’t want to be in pain all the time, it was such a nice feeling to know that I wasn’t making it up.
"It was a relief, but it’s a shame that the treatment is so intense.
"It is for life and it is intense. I struggle to even walk my dog because of my chest pain.
"I had to get an ambulance last week because I honestly thought my aneurysm had ruptured, and I’ve never been so scared in my life.
"I really thought that it had ruptured and I was 25 and dead. It was so scary."
Behcet's is an incurable form of vasculitis with varying symptoms, and with little research surrounding the illness, it is difficult to receive a diagnosis.
