Slovak Myeloma Society – Patient’s Club
History of the Club
The Patient’s Club is a stand-alone section of the Slovak Myeloma Society since 2006. It supports the patients with multiple myeloma and similar diseases. The Club associates the patients and their family members. The aim is to be active in self-funded events and to build prerequisite for better quality of life of patients with multiple myeloma.
Goals
The aim of The Patient’s Club is to build a better awareness, education and mutual communication of the patients. To help the patient so he is not alone with his troubles. To cooperate with the patient's family members and relatives. The mission of The Patient’s Club is to bring the patient back to a normal life.
The philosophy of the members of The Patient’s Club is: „Even if many of us may not reach the highest targets, still there are parts of our lives, which fulfill us with its beauty, meaning and mission. And there is our strength, meaning of life and victory over destiny.“
The communication between the doctor and the patient comes out from the fact, that the doctor does not have his own experience with the chemotherapy or the transplantation. Therefore the patient is an important source of information for the doctor and the doctor an irreplaceable subject for the patient by multiple myeloma treatment.
Activities
The Patient’s Club is a regular member (with voting right) of the European patient’s group network Myeloma Patients Europe
(www.myelomapatientseurope.org).
The European initiative is focused on the treatment and care of the patients with multiple myeloma, as well as their family members and close relatives of the patient. It associates the patient organizations from whole Europe, provides the newest information on medical treatment, new drugs, information exchange and application of the patient’s rights.
The Patient’s Club SMyS is covering several long-term projects:
Project – Humanization of the patients environment
The aim of the project is to create conditions for a better environment in the waiting rooms of hematology departments, as well as in the bed parts during patient’s hospitalization. Priority financial resources for this activity are the contributions from the 2% of the income tax, as well as financial tributes from the donors. In the waiting rooms of the hematology departments we are installing radios and CD players, in the bed parts of the transplantation tract DVD players and TVs, and we are also increasing the standards of the social and hygienic facilities.
Project – Video stories of the patients
The aim of the project – “My Story“ is to show the possible activities and the future life possibilities of the patients with myeloma in different forms of personal activities. The stories of the patients are showing the real experience and feelings, which come with the treatment. The stories represent the position of individual patient and motivate and support the patients in solving the complex situations they are facing in their personal lives. The video stories are presented on the patients meetings and in the Slovak seminar of patients and their relatives “The school of myeloma for patients“.
Project – Myeloma patients Art
The aim of the project – “Myeloma Art“ is to present the art production of the myeloma patients within their personal activities. The works are showing the inner feelings of the patients during the treatment and during the maintenance therapy. Field of interest – poetry, prose, drawing, painting, graphics, woodcutting, photography.
Project – Integrative myeloma therapy
The aim of the project – “Back to health“ is to map the complementary methods in the multiple myeloma treatment. To inform the patients about the complementary and integrative hematology. To involve the patients in an active myeloma treatment in order to multiple the effect of the complex myeloma therapy and minimize the side effects.
Activities of The Patient’s Club
In its long-term activities The Patient’s Club SMyS initiated the specialized therapy for the myeloma patients in remission in the Nimnica Spa. The Spa treatment uses the natural healing sources – mineral waters, mud, climate and natural gases. Besides the medical treatment, part of the therapy is also a diet.
For the patients with multiple myeloma the goal is the reconvalescence after chemotherapy. For the patients with polyneuropathy and skelet impacts it is the moderation of the symptoms and subjective better feeling. Adjustment of the muscle dysbalance, strengthening of the muscles, increasing the complex physical condition and last but not least psychic relaxation.
The patient’s club Eliaš (Bratislava) as part of The Patient’s Club SMyS, organized a week in Nimnica Spa for the patients, with the financial support of the League against cancer.
The Patient’s Club SMyS started the monitoring study – Integrative myeloma therapy, where the patients are anonymously responding to a questionnaire related to the complementary treatment. The treatment used in the integrative hematology is connecting the conventional treatment with chemotherapy, autology and alogennic transplantation, radiotherapy and immunotherapy with the complementary treatment, which is provably increasing the quality of life and prolonging the life of the patient. The project is granted by the specialists from the medicine praxis.
Name: Slovenská myelómová spoločnosť – Klub pacientov
Contact: Miroslav Hrianka
Tel.: +421 907 334 254
e-mail: klub.pacientov@myelom.sk
Registration number ID: 30802067
Web: www.myelom.sk
