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 Re: يا فخرنا سودانية اخرى....تعيّن أول خبيرة في برنامج بريطاني لمكافحة فيروس خطير (توجد صورة) (Re: abubakr)
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Pharmacist's world first in care of patients with rare virus
The National Centre for Human Retrovirology, based at St Mary’s Hospital in Paddington, has appointed a pharmacist with the specialist role of improving care for patients with conditions caused by a very rare virus.
Azza Elnusairi is believed to be the world’s first HTLV-1 Specialist Pharmacist. HTLV-1 (Human T-Lymphotropic Virus Type 1) is a retrovirus transmitted via blood, unprotected sex or breast milk and which can cause a form of blood cancer or debilitating, often disabling, muscle weakness in the lower limbs.
Both conditions are extremely rare in the UK – only around 12 people a year are diagnosed with the muscle weakness condition (HTLV-1-Associated Myelopathy, or HAM) and fewer than 20 with the blood cancer (Adult T-cell Leukaemia/Lymphoma, or ATLL).
But identified cases are on the increase, partly as a result of greater mobility to and from countries in East Asia, Western Africa, South America and the Caribbean where the virus is more prevalent, and partly due to greater awareness. In addition, a larger number of asymptomatic HTLV-1 carriers have been identified since the National Blood Service began screening all donated blood for the virus in August 2002.
People with HTLV-1-Associated Myelopathy (HAM) experience spinal cord inflammation that can cause a wide range of problems including severe pain, stiff or unsteady lower limbs (often resulting in disability), awkward changes in bladder function (such as urinary incontinence), bowel constipation and/or erectile dysfunction.
But, although there is no cure, the symptoms of HAM can be managed with appropriate medication – and that’s where Azza’s role comes in.
“This is the only post of its kind in the UK and, as far as I know, it’s the only specialist HTLV-1 pharmacy role in the world,” says Azza, “so it’s a really exciting opportunity.
“The complex range of symptoms, combined with the fact that many sufferers are older people and that they are often taking over-the-counter or alternative medicines in addition to their prescription, create a cocktail of triggers for poor compliance and unpleasant side-effects.”
Azza joins a multidisciplinary team of clinicians, researchers, nurses and physiotherapists at the St Mary’s centre, which is the UK’s national referral point for HTLV-1. She is working with HAM patients referred to the centre to ensure they are on the best combination of drugs, compliant with their medication and not experiencing unnecessary side-effects. As well as seeing patients face-to-face, she is conducting telephone consultations and medication reviews and adjustments, and counselling patients on how best to manage their medication.
She will also be providing pharmacy input into the centre’s research activities which mainly focus on conducting clinical trials of the off-label* use of existing drugs – for instance, investigating whether certain immunosuppressants can alter the course of the disease.
Azza says: “It is a steep learning curve, but it’s very interesting working in one of a handful of clinics worldwide that specialise in HTLV-1 conditions and there is great scope for a pharmacist to play a key role in furthering the treatment and care of patients with this very disabling form of myelopathy.
“It’s extremely fulfilling to have extensive contact with these patients and to be able to hold full consultations with them, go through all their medication and offer them the support and help they need to manage it. I am also very excited about the research the team here is carrying out and am looking forward to being able to get involved with it from a pharmacy perspective.”
Azza qualified in 1993 at the London School of Pharmacy and has spent most of her career in the acute sector working in general medicine and medical specialties. In addition to her clinical work three days a week at St Mary’s Hospital, she is a clinical pharmacist at Cromwell Hospital in London and also works with a Pharmacy Education Consultancy to produce educational modules for junior pharmacists.
* 'Off-label use’ means using drugs to treat or manage conditions other than that for which they were originally marketed.
http://www.st-marys.nhs.uk/NewsPage.html?NewsId=183
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