Published: 00:01, 30 March 2016
A woman who’s been having treatment for lupus for seven years has received the bombshell that she doesn’t have the disease.
Kirsty Keep, 23, and her mum Theresa secured a sought-after appointment at Guy’s Hospital, London, with Prof David D’Cruz, an expert in treating the autoimmune disease.
But rather than present Kirsty with the miracle treatment she hoped for, the doctor delivered the shocking news that she has probably been receiving treatment for almost a decade for a condition she does not have.
Prof D’Cruz said Kirsty’s symptoms - chronic pain, extreme tiredness and fits - could be caused by genetic skin and bone disorder Ehlers-Danlos syndrome (EDS) or Postural tachycardia syndrome (PoTS), an abnormal increase in heart rate after sitting or standing up. But more tests are needed to determine this.
Mrs Keep said: “I can’t believe it. She’s been receiving chemotherapy, steroids and all sorts of damaging stuff, which she might not have needed.
"If it’s EDS she should have been having vital physiotherapy and she hasn’t had any for seven years.
“I’ve read so much about lupus for years and now I’ve got to start again with something else. I’m so angry.”
Kirsty, who is at home in Mangravet, said: “It was such a shock, I don’t know what to think or whether to believe the doctor when he says I could have EDS or PoTS. I’m still spending a lot of time in bed and I’m knackered from travelling to London for appointments.”
Prof D’Cruz said Kirsty is probably not suffering from lyme disease either, which her mum believes she contracted from an insect bite aged 12.
Samples of Kirsty’s blood have been sent to ArminLabs in Germany, where they specialise in testing for lyme and other tick-borne diseases.
Since we shared Kirsty’s story in February almost £20,000 has been raised for treatment through donations and fundraising events.
Mrs Keep said: “We can’t even begin to thank everyone who has donated. We’ve got the funds but we don’t know which way to turn. What if all the money in the world can’t help her?”
A Maidstone and Tunbridge Wells NHS Trust spokesperson said: “We do not believe there has been any misdiagnosis of Miss Keep’s condition – we have been working closely with other healthcare specialists to find the best way of treating her symptoms, which are very complex.
“We are unable to share a patient’s medical information with the Kent Messenger but will, of course, discuss any aspect directly with Miss Keep should she wish.”