Student Annalize James' mucinosis skin treatment fight

Annalize James has a form of mucinosis which causes lumps to form on her skin

A student with a rare skin disease which could be fatal if it spread to internal organs says she has been denied funding for a new treatment.

Annalize James has a form of mucinosis, which causes lumps to form on her skin.

The 19-year-old from Cwmcarn, Caerphilly, is waiting on the result of an appeal against the decision by Aneurin Bevan Health Board.

But a health board spokesman said no final decision had been made.

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I feel like I can get away with the ones on my arms and my legs but they're starting to come on my trunk now”

End Quote Annalize James

In August 2012, she had applied for £11,000 in funding for an intravenous treatment which would be administered by a consultant in London.

However the health board turned down the application.

The lumps on her skin are caused by a gel usually found elsewhere in the body, and can be fatal if they spread to the internal organs.

Ms James is studying drama at the University of South Wales and says she is concerned about both the health implications of the condition and the effect it could have on her chosen career.

She said that "obviously appearance for a 19-year-old girl is quite important, but it's my health because it's scary, because of just not knowing when it's going to stop.

'Serious implications'

"I feel like I can get away with the ones on my arms and my legs but they're starting to come on my trunk now.

"I've got some on my neck. Your face and neck - if any more come I don't know what I'm going to do."

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The alternatives for Annalize are that she has no treatment and her disease gets worse”

End Quote Prof Sean Whittaker Consultant dermatologist

Consultant dermatologist Prof Sean Whittaker of Guy's and St Thomas' Hospital, London, says the refusal could have serious implications for Ms James.

"The alternatives for Annalize are that she has no treatment and her disease gets worse. The other alternative would be a stronger form of treatment related to chemotherapy which is a major risk for a young woman."

In a statement Aneurin Bevan Health Board said: "When a patient requires treatment which falls outside the range of routine services provided by the NHS we investigate the possibility of funding through an individual patient funding request.

"To ensure the appropriate use of NHS funds a wide range of evidence is sought from experts to ensure that it is the right treatment for the patient.

"A panel would also seek assurance that the treatment is likely to be effective.

"It would be inappropriate to give specific details in order to protect patient confidentiality but in this case no final decision has been made and treatment options are still being considered."

A spokesman added that it was looking at whether Ms James could have treatment within the health board area.

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