‘She was a walking skeleton, brushed off by doctors’, says mum of girl diagnosed with ‘one of world’s worst diseases’
WHEN mum Vicky Suggett noticed her daughter was unwell, she did what every parent would do.
She took her to see her GP, followed their advice, and hoped that Ellie would start to feel better very soon.
But she didn’t. The 21-year-old started deteriorating rapidly.
She lost a stone in just four weeks and became so weak she could barely get out of bed – yet doctors still brushed her symptoms off as side effects from the Covid vaccine or a mild infection.
Vicky, from Ormesby, North Yorkshire, said: “She was just fading away from us in front of our eyes.
“She was like a walking skeleton but nothing was getting done.”
Eventually, Ellie was diagnosed with a disease so rare it is described as affecting “one in a million” people.
Takayasu arteritis is a type of vasculitis, which causes inflammation of the blood vessels.
Just 100 new cases are diagnosed every year in the UK.
Ellie’s symptoms started in November 2022. She had a recurring pain in her left temple and the left side of her jaw.
But looking back, Vicky said there were warning signs well before this.
“Months earlier, she had enlarged lymph nodes under her left arm – the side that’s damaged now – but she was discharged from the breast clinic, with doctors saying the inflammation was because of the Covid vaccine,” she said.
“We left thinking everything was OK, but clearly it wasn’t.”
Ellie dulled her headaches with ibuprofen and soon started to feel incredibly tired.
“I was really struggling with fatigue,” she said.
“The only way I can describe it is that I was a 90-year-old in a 21-year-old’s body.”
Blood tests came back normal, aside from slightly elevated erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP).
Both are markers of inflammatory conditions, including arthritis and inflammatory bowel disease, as well as a heart attack and sepsis.
But medics weren’t concerned, thinking her levels were probably higher due to a lingering infection.
“We came away happy, thinking that everything was fine again,” mum-of-two Vicky said.
Ellie then started losing her appetite and experiencing other, more disturbing symptoms.
I really started to believe all these symptoms were just in my head
Ellie Suggett
“She had temporal headaches, she was seeing kaleidoscopes and flashing lights in her eyes, and the pain in her jaw was horrendous,” her mum said.
“She would just sit and cry for hours over it all.
“I’d come home from work and Ellie would just be lying on her bed, so tired she couldn’t even get up.”
Ellie, now 22, added: “The pain then started in my left arm and I could barely do anything with it – I couldn’t even wash my hair.
“I couldn’t eat so I lost a stone in four weeks, and I was only eight stone to begin with.
“My mental health started to deteriorate as I really started to believe all these symptoms were just in my head.”
Deciding enough was enough, Vicky took her daughter back to the GP, where more blood tests were run.
Doctors ruled out arthritis, but Ellie’s ESR and CRP levels remained higher than they should be so she was prescribed antibiotics to treat her suspected infection.
“All this time, I knew something was wrong, but I just felt like no one was listening to us,” Vicky said.
“Ellie was in so much pain but was made to feel like it was health anxiety.
“She was taking so much Nurofen and we just weren’t getting anywhere.”
Eventually, on May 30, after yet more blood tests, Ellie got a call from her GP.
Her ESR and CRP levels were now so high they told her to go straight to James Cook University Hospital in Middlesbrough.
Vicky said on both measures, she should have scored no more than five, but Ellie was at 124.
At the hospital, doctors couldn’t find a working pulse in Ellie’s left arm – and there were “totally different blood pressures” on each side of her body.
A CT scan revealed she had “extensive vessel wall thickening of the aorta” and her “subclavian artery was basically closed so no blood supply was getting to her left arm”.
The following day was diagnosed with takayasu arteritis.
‘We were all absolutely heartbroken’
“Nobody would have dreamed of this,” Vicky said.
“I’d never heard of it. Nobody had. But people say it’s one of the world’s worst diseases and they told us it was one-in-a-million in the hospital.
“We were all absolutely heartbroken.”
In a frenzy, Vicky began Googling the condition and soon felt “terrified”.
She then spoke to the consultants and became even more petrified.
“They told us quite a lot of scary stuff,” she said.
“They said Ellie would probably have chemotherapy, she may not be able to have children, and she would need a hell of a lot of steroids, which changes your appearance a lot.
“Doctors also told us that if we hadn’t got her to the hospital when we did, she could have gone blind, had a stroke or heart attack, and possibly died.”
Ellie, a receptionist, added: “It was so much for my 21-year-old mind to comprehend.”
What is takayasu arteritis?
Vasculitis is the name of a group of conditions that cause inflammation of the blood vessels.
Takayasu arteritis is one of these conditions. It primarily affects the aorta and its branches, which supply blood to the arms.
It mainly affects young women and is very rare in the UK, with just 100 new cases diagnosed every year.
Causes
The cause of takayasu arteritis remains unknown, though some experts believe it is precipitated by an infection.
Symptoms
- Generally feeling unwell
- Extreme tiredness
- Night sweats
- Fever
- Weight loss
- Muscle pain
- Joint pain
- A rash
- Dizziness or lightheadedness
- Shortness of breath
- Cramping in the arms, legs or chest on exertion
Treatments
Treatment plans usually involve steroids and immunosuppressant drugs.
Who is most at risk?
Around 80 to 90 per cent of patients are female, and most people experience symptoms aged five to 40.
The condition is more common in people from the Far East, Japan and the Asian sub-continent.
Takayasu arteritis is sometimes known as a ‘pulseless disease’ because there is often no pulse in one of a patient’s wrists.
Inflammation narrows vessels making it harder for blood to travel through them, meaning it doesn’t reach some parts of the body.
Source: Vasculitis UK and Versus Arthritis
She was discharged after a week with steroids and started receiving an immunosuppressant via transfusion every month.
Despite the internal damage being “irreversible”, Ellie is now stable, so she is trying to wean herself off the “awful” steroids.
Ellie and her mum are also trying to encourage other families to push for answers if they are experiencing similar “unexplained” symptoms.
Vicky, who praised her daughter for being “so brave through such an overwhelming and scary experience”, said: “I want to get awareness out there so other young girls who are at home feeling weak and can’t even get out of bed because they’re that fatigued and they’ve lost their appetite and they don’t know what’s going on can get help.
“If you go to your doctor and say you are feeling fatigued and your muscles and joints are aching, they probably won’t take too much notice.
“Takayasu arteritis is hard to diagnose, but maybe if our GP had checked Ellie’s pulse on both wrists instead of just one, they would have realised she had no working pulse on her left side.
“If you don’t think your doctor quite knows, or you don’t feel like you’re getting anywhere with them, please go to A&E.
“I wish with all my heart that we had just got straight in the car and gone to A&E.
“A parent’s gut instinct about whether there is something wrong with their child is always 100 per cent right.
“I just knew there was something wrong. I used to start crying at work because there was nothing I could do.
“I look back and think that if we had just gone to A&E, we might not be at this point now.”
The Suggett family are raising money for the charity Vasculitis UK through GoFundMe to help others with similar blood vessel conditions.
Vicky said: “Thank you so much to everyone who has donated so far.
“Our friends, family and the local community have been so caring while we go through this.”
