Hospital backs campaign to improve awareness of cruel and complex disease 

30/06/2010 00:00 

The National Hospital for Neurology and Neurosurgery (NHNN) is a leader in the care of patients who suffer from a cruel and complex disease which can strike generations of the same family.

Clinical scientist Dr William Wakeling, in the neuro-genetic testing laboratory at the Institute of Neurology in Queen Square.

Clinical scientist Dr William Wakeling, in the neuro-genetic testing laboratory at the Institute of Neurology in Queen Square.


A national awareness campaign launched this week highlighted the hospital’s specialist team and their ground-breaking work and research into Huntington’s Disease (HD)

There is currently no cure or preventative treatment for the genetic neurodegenerative condition which casts a shadow over the whole family: children of sufferers have a 50% chance of developing the disease.

Up to 80 patients a month visit the specialist multidisciplinary clinic at the NHNN and access nurse-led clinics and a twice-weekly telephone clinic.

The multi-disciplinary team – led by Professor Sarah Tabrizi – offers diagnosis, support, information and symptom management. Presymptomatic genetic testing is available for those at risk of developing HD and prenatal testing and preimplantation genetic diagnosis are also options for those who do not want to risk passing on the condition to any children they may have. Patients are also updated on the latest research and have the opportunity to get involved in research projects where possible.

Rachel Taylor, the nurse consultant for neurogenetics at the NHNN, said: “Huntington’s disease is a highly complex disease which devastates whole families.

“In some families it remains a secret that is never talked about and parents can feel very guilty that they have passed on the gene to their child. It’s important to raise awareness about the condition and to call for continued support for care and research – research is the hope for the future.”

Hospital backs campaign to improve awareness of cruel and complex disease

Nurse consultant Rachel Taylor


Professor Tabrizi, professor of clinical neurology, is currently leading an international study – TRACK-HD – which aims to define the best combination of assessments to be used in clinical trials of disease-modifying treatments in Huntington’s Disease, particularly in people with premanifest or early disease.

People with Huntington’s disease may experience a range of physical, cognitive and psychological problems. Physical symptoms include involuntary movements, increasing problems with mobility, difficulty swallowing, slurred speech and weight loss. Speech and language therapists, physiotherapists, occupational therapists and dieticians at NHNN and in the community are able to offer practical support, advice and symptom management.

“Thinking” skills such as planning and concentration also deteriorate. Patients may also become impulsive, lack insight, become depressed or experience other distressing changes in behaviour. In more extreme cases, patients exhibit aggressive, psychotic or obsessional behaviour. The multi-disciplinary team at the NHNN is well equipped to offer psychiatric and psychological support.

The National Huntington’s Association campaign aims to raise public awareness for the condition and is calling for continued funding to support research.

 

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