Future Developments for Gauchers Disease
including Enzyme Replacement Therapy
Prof Timothy Cox who heads the
Gauchers Centre at Addenbrooke's Hospital, Cambridge, spoke about the history
and future developments of Gauchers disease including the use of enzyme
replacement therapy.(March 2002).
Monitoring and Testing Gauchers
Disease
Dr Atul Mehta runs the Gauchers Centre at the Royal Free
Hospital in London together with Specialist Nurse Linda Richfield. Dr Mehta
explained the need for the regular monitoring and testing of patients.(March 2002).
Pain Management and Ozone
Treatment
Prof Ari Zimran spoke about pain management and ozone
treatment at the 5th Conference. He said that the next generation of people
with Gauchers disease will hopefully not have to suffer pain from the disease.
(March 2002).
HOW THINGS WERE: Melanie's Story A
Splenectomy Three Months After My Son's Birth
Melanie, now aged 44, told
her story of pain and hope over the past 30 years at the Association's
Conference on 11 November 2001. Her brave story should be compared with how she
would have been diagnosed and treated if she had been born 25 years later, as
in Emily's case which is described in the next story. (March
2002).
HOW THINGS ARE: Emily's Story
Growing
up with Gauchers Disease
Emily was diagnosed when she was 13 years old
but fortunately started Cerezyme soon after. She is now a beautiful young woman
aged 18. Her story is an example of how enzyme replacement therapy has enabled
her to fulfil her potential and contrasts with Melanie's story above.
(March 2002).
Children with Gauchers
Disease
Dr Ashok Vellodi,who runs the paediatric Gauchers Centre at
Great Ormond Hospital for Children and is pictured below, spoke about children
with Gauchers disease at the 5th Conference. He said that his Centre and that
of Dr Ed Wraith at the Royal Manchester Children's Hospital worked closely
together and within common guidelines. (March 2002).
Bone Complications and Launch of Research
Project
Prof Timothy Cox began his talk at the 5th Conference by
describing the distressing symptoms of bone complications and then described
the exciting Collaborative Bone Research Project to be undertaken by the four
UK Gauchers Centres. (March 2002).
Progress of OGT 918 Substrate Balance
Therapy
Prof Ari Zimran has observed 500 patients at the Gauchers Clinic
in Jerusalem, Israel and spoke at the 5th Conference in November 2002 about the
changing pattern in the symptoms of Gauchers disease and the new substrate
balance therapy (OGT 918) which is currently on trial. (March
2002).
Don Tendell Appointments
Don
Tendell will sit on the Committee of the UK Forum of Genetics and
Insurance and the Human Genetics Commission Consultative Panel
(March 2002).
Third Alan Gordon Memorial
Award
On Saturday 10 November 2001 at the Association's 10th Anniversary
Celebratory Dinner, Gloria Gordon, widow of the late Alan Gordon, presented
Tanya Collin-Histed with the 3rd Alan Gordon Memorial Award in recognition of
her outstanding work in helping families with neuronopathic Gauchers disease.
(March 2002).
Celebration to Share the Successes of the
Last Ten Years
The Gauchers Association celebrated its 10th Anniversary
on 10 November 2001 with over 115 guests at a special Dinner held at the
Wembley Plaza Hotel on the outskirts of London the day before the Association's
5th Conference.(March 2002).
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