What We Can Achieve With
Treatment
At the Gauchers Association's 6th Conference held in
Manchester on 30 November 2004, Prof Timothy Cox described what can be achieved
with treatment for people with Gauchers disease. (March
2004).
Children's Needs and Facing
Adulthood
Dr Ed Wraith who runs one of the two paediatric, Gaucher
Clinic at Royal Manchester Children's Hospital spoke about the needs of
children and when they face adulthood at the Gaucher Conference on 30 November
20003. (March 2004).
Gill's Story: Handing Over
Gill's
son Jon has Gauchers disease. In September 2001 he started university. He has
been receiving enzyme replacement therapy since he was 11 years old. How does
he manage his infusions away from home? Gill explained how she handed over this
responsibility, at the Gauchers Conference in November 2003. (March 2004).
Bone Pain and Surgery
Dr Atul
Mehta, who heads the Gaucher Clinic at the Royal Free Hospital, London, spoke
at the Gaucher Conference on 30 November 2003 about the bone pain, disability
and surgery which has affected patients with Gaucher Disease, and can still
remain a problem. (March 2004).
Pregnancy in Gaucher Disease
In
the past, some women with Gaucher Disease were discouraged from child-bearing
and therapeutic termination was sometimes advocated due to feared risks to the
mother. Despite this, many women with Gauchers disease have produced healthy
babies, even before enzyme replacement therapy. Linda Richfield, Clinical Nurse
Specialist at the Gauchers Centre at the Royal Free Hospital talked about
pregnancy in Gauchers disease at the Conference on 30 November 2004.
(March 2004).
The Development and Therapeutic Position
of Substrate Reduction Therapy
Prof Timothy Cox described the
development and therapeutic position of substrate reduction therapy and the
first drug (Zavesca) of its type to receive marketing approval at the UK
Conference held on 30 November 2003 and at the Dutch Conference held on 26
October 2003. (March 2004).
Israeli Doctors Jointly Presented
with the Alan Gordon Memorial Award
Prof Ari Zimran and Dr Debby Elstein
were jointly presented with the Alan Gordon Memorial Award at the Manchester
Conference of the Gauchers Association on 30 November 2003. Dr Elstein received
the Award on behalf of the two doctors who run one of the largest Gaucher
Clinics worldwide at the Shaare Zedek Medical Center in Jerusalem. The
Certificates with the Award of £1,000 was presented by Robert Gordon, the
only son of the the late Alan Gordon who was the Gauchers Association's first
treasurer. (March 2004).
Experience from over a decade in
Israel
In the last 18 months, Prof Ari Zimran and our team have
published many research ideas that have evolved over the past decade in our
Gaucher Clinic in Jerusalem, said Dr Debby Elstein after receiving the Alan
Gordon Memorial Award, won jointly with her colleague Prof Zimran awarded at
the UK Conference on 30 November 2003. (March 2004).
Genetic Counselling
Genetic
counselling means the communication of information and advice about inherited
conditions in order to help an individual or family comprehend medical facts,
including diagnosis, the probable cause of the disorder and the available
management, explained Sian Goodwin, Clinical Nurse Specialist for Gaucher
Services at the Royal Free Hospital, during her talk at the UK Conference on 30
November 2004. (March 2004).
A World of Difference
Gaucher
Vereniging Nederland held its 20th anniversary Symposium on 24-25 October 2003
at Lage Vuursche in Holland. 120 delegates comprising patients, families,
doctors, scientists, politicians and pharmaceutical companies heard speakers
from Holland, the UK and Germany discuss the progress that has been made for
many patients and the need to help those less fortunate than themselves.
(March 2004).
Biochemical Markers
In Gaucher
disease storage of glucosylceramide (glucocerebroside, the fatty tissue) takes
place mainly in a certain cell type: the macrophage, explained Dr Ans Groener
of the Dept of Biochemistry, Academic Medical Center, Amsterdam. (March 2004).
Every Disadvantage has its
Advantage
This statement was quoted by the famous Dutch football
player, Johan Cruyff, concluded Prof Hans Aerts of the Dept of Biochemics at
the Academic Medical Centre of Amsterdam, at the end of the Dutch Conference on
25 October 2003. (March 2004).
Insurance - A personal view
There are
four areas of insurance where people with Gaucher disease and their families
may be interested: life, travel, long term care and pensions. (March 2004).
Independence
Dr Patrick Deegan,
Senior Research Associate and Honorary Consultant at University of Cambridge
and Addenbrooke's Hospital, spoke about the potential for independence by
people with Gauchers disease . Dr Deegan sees patients at the Gauchers disease
Clinic and is closely involved in the Bone Research Project. (March 2004).
Current and previous issues of Gauchers News and the
alphabetical index
Associations Around The World
A list of addresses,
phone numbers of Associations and contacts operating in 39 countries. Latest
addition or change: March 2004.
Physicians with experience of Gaucher
disease
European Gaucher
Alliance
The aims of the EGA are currently available in
English, French, Spanish, Italian, German, Dutch, Swedish, Russian, Polish,
Hungarian, Hebrew, Czech, Bulgarian, Romanian and Finnish
translations.
Gaucher's Association Aims and Disclaimer
Contenido en español (Spanish translations).
DISCLAIMER
Please note that anyone who suffers from Gaucher's
Disease or thinks they suffer from it should consult a
physician who is experienced with
dealing with the condition. The information included on these pages is intended
to be useful to patients and physicians but it is no substitute for skilled
medical advice.
Gauchers Association Web pages are designed and maintained by Wisebuy Internet.