Portsmouth woman shares story of illness during awareness month

Susanne Stanbury with husband Rob  Picture: Portsmouth Hospitals NHS Trust
Susanne Stanbury with husband Rob Picture: Portsmouth Hospitals NHS Trust

South Central Ambulance Service holding forum event

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A WOMAN is sharing her story to make others aware of a life-limiting illness.

Susanne Stanbury suffers with vascular Ehlers-Danlos syndrome (EDS) which affects her blood vessels and has given her a predicted life span of 40 years.

All the problems I’d had over the years were written in black and white before my very eyes.

Susanne Stanbury

The 33-year-old from Portsmouth was diagnosed with the illness five months after she got married and now, four years later, she is telling her story during EDS awareness month.

She said the problems started when her leg hurt. After three days of pain, she was referred to Queen Alexandra Hospital in Cosham by her GP.

After several scans it was suggested that Ms Stanbury may have EDS, so she underwent various blood tests and scans and waited three months for the results.

She said: ‘I’d never heard of EDS when the doctor mentioned it. So naturally I spent three months researching it, and the more I read the more I convinced myself that was what I had.’

In the past Ms Stanbury had suffered with pulled muscles, feeling exhausted, having allergic reactions to food and bruising easily, all of which are symptoms of EDS.

She added: ‘Reading online about EDS, something suddenly clicked. All the problems I’d had over the years were written in black and white before my very eyes.’

Susanne’s diagnosis of vascular EDS means her blood vessels or organs can rupture at any time. Recently she had to undergo an operation after the artery in her brain burst and started to push against her right eye.

Since the surgery she can no longer work or travel abroad and relies on a wheelchair for mobility.

Despite EDS being a genetic condition, Susanne is the first person in her family to be diagnosed and remains only the second person in 15 years that has been knowingly diagnosed with vascular EDS at QA Hospital.

Paul Gibbs, a vascular surgeon at Portsmouth Hospitals, said: ‘Living with vascular EDS results in a number of problems.

‘Day to day it makes a person bruise incredibly easily as their blood vessels are more fragile.

‘The greatest issue, though, is that you never know when the next true catastrophe is going to happen and whether it will result in your death.

‘Susanne says having vascular EDS is a life sentence which will ultimately take her life. She wants to spread the word about the symptoms because if the diagnosis is known, management is more successful and survival is higher.’