ECPC's member of the month April 2009 is:

TÜNDE KAZDA

My Organisation

CML and GIST Patients Advocacy (former name “Recovering with STI”) was founded in 2002 and aims to represent the interest of the CML and GIST patients, to share information on the treatment and on the side effects: Above all, we want to help patients not to be alone with the disease and with their fear of the unknown.

Our activities

• To provide information on the treatment options in CML and GIST
• To address the problems of the patients and help to find solutions
• To represent the interests of CML and GIST patients
• Collecting and distributing information (website and newsletter)
• Organizing patient-physician meetings

Services

• On the website we made large, clear and easy comprehensive information
• Involve specialists to answer questions of the patients and their family members
• Providing a forum, where they can share information
• Publishing patients’ stories on the website to show their fight and experiences
• Organizing meetings, where not not only specialists are invited –because the fact of cancer changes lives and patients need other support e.g. diet nurses, psychologists ect.

Further plans

• We would like to reach out to more patients, in similar situations to know each other and to be able to help each other with valuable information.
• We would like to activate more patients to take an active role in the advocacy and make them interested in setting up local communities.
• We would like our meetings to be open for other oncological diseases because there are lot of common topic and because of taboos patients usually only speak about between familiar faces.

Representatives:

• Head of the advocacy: Dr. Hegedűs Péter (Suffer from CML from 1992)

• Secretary, coordinator: Kazda Tünde (suffer from CML from 1996)

My story

I was born in 1974 and diagnosed with CML (Chronic Myeloid Leukaemia) at the age of 22 in 1996. At my diagnosis my son was 8 months old and my marriage was just about to collapse. My doctor told that I could only survive if I got a bone marrow transplant.

No donor was found, and before I ran out of time, I was lucky enough to have the chance to undergo autolog-stem cell transplantation in 2000. The first bone marrow sample showed signs of almost complete remission. After about half a year the bone marrow results got worse. I was found to be in the so called “accelerated phase”. Once again I was lucky to have the opportunity to participate in the clinical study of a drug called “STI”. I had nothing to lose, and indeed, after 6 months my results improved radically, and my bone results have been negative ever since. I am raising my son as a single mother and I’m working for a PR company to make my living. I am the spokesperson of the group, as well as an active organiser of their programmes. In 2005 my book on my story was published under the title: “Living with the enemy”.

How to contact me

http://www.cmlgist.hu
email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Tel.: + 36 20 33 83 331/Kazda Tünde

See also our previous ECPC Members of the Month.