GAUCHER DISEASE


GAUCHERS NEWS OCTOBER 2004


Gauchers News Oct 2004

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.

E Mail Discussion List

Conferences

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

Other Relevant Web Sites

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.