Bone Marrow Transplant Corrected Gaucher's Disease 19
years ago
Matthew was eight years old when he had a bone marrow
transplant to correct his Gaucher Disease at the Westminster Children's
Hospital in 1985. Although now considered an inappropriate method to treat
Gaucher Disease, Matthew is 27 years old, healthy and has produced a daughter
of his own. (October 2004).
Royal Free Hospital in Cerezyme Dose
Frequency (Once a Month) Study
(October 2004).
Julie's Story: Our son Sam has Gaucher
Disease
Sam was diagnosed when he was three years old in January
2002. The trauma that his mother Julie and father Steve went through until his
diagnosis is told here by Julie. (October 2004).
Suzanne's Story: Did They Really Listen?
Suzanne
has Gaucher Disease and despite having had two hip replacements and six
revisions, she has worked as a registered physiotherapist for 25 years,
presently at Princeton Neck and Back Institute, New Jersey, U.S.A.
(October 2004).
When and How to Tell Your Children:
Psychologists speak to Type 3 Families
When and how parents should tell
their child and their other children about the child's diagnosed condition was
discussed by two paediatric psychologists at Great Ormond Street Hospital for
Children. (October 2004).
Trial for new Enzyme Replacement Therapy for Gaucher
Disease to take place in Israel
A clinical trial started in July 2004
for a new enzyme replacement therapy for Gaucher Disease developed by the
pharmaceutical company, Transkaryotic Therapies Inc (TKT). (October 2004).
Good News from Venezuela: Victoria's Story -
From Gaucher Disease to Computer Science Engineering
Victoria was born
and raised in Venezuela. As a proud father, he has asked for her story to be
published here. (October 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.