Published: 00:01, 06 July 2017 |
Summa Barker, from Rushenden, was given the devastating news she had stage two chronic progressive MS last month after losing the use of both legs and her left arm.
The 22-year-old has also suffered from severe memory loss and impaired hearing.
Family and friends have rallied around the former Minster College student to raise money and awareness of how her life has changed.
But after weeks of tests and trips to the Kent and Canterbury Hospital, Summa was told she actually has an incredibly rare neurological condition called Susac’s syndrome.
Her cousin Maria Horner said: “After waiting for treatment to start for MS, Summa’s doctor decided to carry out some other tests.
“It’s been brought to light she does, in fact, have Susac’s syndrome.”
Mrs Horner, 32, of Manor Grove, Sittingbourne, said Summa is one of just 375 reported cases in the world of the syndrome.
She said: “Doctors still only have limited information on it, as it is so rare, and they’re currently still in research stages to help their patients.
"Most patients were originally diagnosed with MS first of all because of the symptoms being so similar.”
On what this means for Summa, Mrs Horner said: “Although there are a lot of unknowns, what we do know is long-term prognosis is much better than MS as doctors can limit ongoing effects.
“Doctors are also confident that, with aggressive physiotherapy, Summa should be able to regain the use of her legs and arm and, over time, the swelling to her brain will subside.”
Mother-of-four Mrs Horner said: “Of course there will be some side effects, but the family remain positive that over time, and with the right treatment, Summa will be able to live a normal life with her daughter Jasmine.”
Mrs Horner said Summa has started treatment and fundraising continues to help with expenses, such as travel to hospital.
Half of the money will help London’s King’s College Hospital with further research. More than £2,600 has been raised.
To donate, see tinyurl.com/Summa2K
What is Susac’s syndrome?
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