Report by Dr Marcelo Iastrebner and Dra Haydee A Gonzalez
The meeting was organised thanks to the support of the Sociedad ARGENTINA de Hematologia, MDS Foundation, GLAM (Grupo Latinoamericano de Médicos de MDS) and Linfomas Argentina. Its main objective was to inform patients about MDS and made this disease be known among the general population.
It was attended by patients from the City of Buenos Aires as well as from Greater Buenos Aires, on an invitation from our MDS Sub-commission. That invitation included four questions which they were requested to answer before attending:
1. What do you think MDS is?
2. What treatment are you receiving?
3. What would happen if you did not do the controls?
4. Do you have any story to tell us about your MDS experience?
Patients and relatives felt comfortable and asked many questions about new drugs, treatments, frequency of these meetings. One of them asked about clinical trials and our nurse coordinator, Mariela Blanco, described the process and stressed the fact that it is a safe procedure.
Haydee Gonzalez is the president of a Haematology Disease NGO, talked about her own experience as a patient. What she said caused a big impact on everybody.
Gabriel Duarte is a nurse with years of experience in Azacitidine, which he administers to patients in hospitals as well as homes. He explained how this drug should be prepared and administered.
We registered 20 patients and their families. They shared breakfast and coffee-breaks, and they looked happy to be able to exchange experiences with others.