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Birmingham children play starring role in world inherited metabolic disorder conference

Press Release   •   Aug 31, 2012 17:35 BST

Young patients from Birmingham Children’s Hospital will play a starring role in the opening ceremony of an annual world conference on inherited metabolic disorders (IMD) in Birmingham next week.

Eleven children and young people - all with IMD - feature in a short film which will be premiered at the start of the prestigious event, to welcome over 1,100 leading IMD experts from around the globe.

IMD encompasses a large number of very rare, disparate and life threatening, inherited conditions which affect all organ systems, particularly the brain and neuro-development.

Birmingham Children’s Hospital was chosen to host the ‘Society for the International Inborn Errors of Metabolism’ (SSIEM) conference as it is the UK’s leading centre for research and treatment, treating around 1,000 patients every year from across the UK and overseas.

Within the Birmingham community it is particularly common in families of Asian origin. Diet therapy is often the cornerstone of treatment but it is complex and without effective management, can seriously impact on the patient and their family’s quality of life.

One of the film’s stars is nine years old Mehvish Ali from Hall Green. She was diagnosed at birth with VLCADD - a disorder where the body is unable to break down certain types of fat. Up to the age of four, Mehvish was regularly in hospital but now she is a little older and has overnight feeds into her stomach (gastrostomy), she only comes in to hospital every six months. 

Speaking about her role in the film, the Robin Hood Primary School pupil, said: 

“I was filmed on the trampoline in my back garden at home and then we went to Cannon Hill Park and Sarehole Mill. We were all filmed running and jumping and we had to look at the camera and do lots of smiling. I’m a bit nervous about so many people seeing the film but it is very exciting too. I loved being part of it.”

Professor Anita MacDonald, Consultant Dietician in Inherited Metabolic Disorders at Birmingham Children’s Hospital, said:

“It is a huge honour to be hosting this year’s conference and we are delighted that we have been able to involve some of our IMD patients in the opening ceremony. These children have a number of problems but the film shows them having so much fun. Despite their conditions, they all have a very good quality of life and seeing the film makes what we do in the metabolic team all worthwhile.

“Conferences like this give specialists from around the world the opportunity to share best practice so that we can further improve the care of our children - like Mehvish and all of her co-stars.”

The four-day conference between 3 and 7 September will be officially opened by Birmingham Children’s Hospital’s Chief Executive Sarah-Jane Marsh and will be attended by nurses, doctors, dieticians and scientists from as far as the USA and Australia.

Ends

For more information please contact Anna Sykes - Senior Communications Manager at Birmingham Children’s Hospital on 0121 333 8504 or email: anna.sykes@bch.nhs.uk

Notes to Editors

  • Very Long Chain Acyl-CoA Dehydrogenase Deficiency (VLCADD) is an inherited disorder where the body is unable to break down certain types of fats to use for energy. The symptoms are evident during infancy and require careful treatment.
  • Birmingham Children’s Hospital is currently taking part in two studies around Inherited Metabolic Disorders. The first is a trial which will see thousands of babies across the West Midlands tested for five rare conditions. Around 75,000 children will be screened at the hospital within their first week of life using a heel prick blood test.

    The second trial is a groundbreaking treatment that is offering hope to patients with Hunters Syndrome, a rare disease that causes irreversible damage to their body and brain. The treatment aims to slow down or stop the damage to their brain, which has never been offered before.

    Birmingham was chosen to take part in both pilots because of its world-leading research and care for children with rare diseases, many of which occur in fewer than one in 100,000 children. These types of diseases are difficult to detect without screening and if unrecognised can lead to children being severely handicapped.

Birmingham Children’s Hospital NHS Foundation Trust provides a comprehensive service to children, young people and their families.

We are one of the leading paediatric teaching centres in the country, with international research and development in areas such as:

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