In Poland today, several thousand people suffer from rare blood cancers. These patients are the same as us, they fulfill various social and professional roles. They have one thing in common - a common disease they struggle with. The strong need for mutual support and establishing relationships was the reason for the creation of the Support Group for Patients with Myeloproliferative Cancer at the Polish Coalition of Cancer Patients.

In Poland today, several thousand people suffer from rare blood cancers. These patients are the same as us, they fulfill various social and professional roles. They have one thing in common - a common disease they struggle with. However, the fight against cancer is not easy, it requires the support of relatives as well as strength and determination in overcoming the hardships associated with the disease on a daily basis. The strong need for mutual support and establishing relationships was the reason for the creation of the Myeloproliferative Cancer Support Group at the Polish Coalition of Cancer Patients. On the one hand, the grassroots initiative is to help and support people suffering from very rare blood cancers, and on the other hand, to improve access to treatment, which some patients cannot count on today.

Support Group for Patients with Myeloproliferative Neoplasms

The idea of ​​creating a Support Group is guided by the need to improve access to treatment for some groups of patients with myeloproliferative neoplasms, in particular for people with myelofibrosis. Patients know very well that the fight against cancer is not equal, some of them, even people with chronic myeloid leukemia, have the opportunity to benefit from effective therapies, the remaining group of patients - is left to themselves. People with myelofibrosis - myeloproliferative cancer with the worst prognosis, whose fate today depends on access to new therapies, are in urgent need of improvement.

- We feel excluded by the he alth care system in Poland, which does not give us the chance to effectively treat and extend our lives in the advanced stages of a serious disease that has affected us, the patients explain. By creating the Myeloproliferative Cancer Patients Support Group, we want to change our situation and help those who may be affected by this severe disease in the future, adds Antoni Markowski, a patient from Inowrocław.So far, apart from the enormous support of our families and the help of specialists, we have struggled with this cruel cancer ourselves. Now, by creating a support group, we support each other and believe that together we will achieve more - argues Markowski.

Patients with myelofibrosis and other rare cancers are fighting for access to effective therapy

A significantly enlarged spleen, reaching a weight of 10 kg and a size of up to 36 cm, making it difficult to move and eat, fatigue, shortness of breath, anemia, weight loss and fever - these are the problems that patients struggle with every day.

Unfortunately, despite the debilitating and life-threatening symptoms of the disease, the patients are still left alone in the fight against the disease. - The he alth department does not notice our needs, not giving us access to effective therapy that would help us deal with the disease - patients complain. By joining a group, we want our needs to be finally noticed and our common voice heard by the Minister of He alth.

By establishing the Support Group, we appealed to the Minister of He alth, in which we asked the Ministry of He alth to recognize the problems of patients with myelofibrosis and other rare cancers. In the letter, we also appealed for facilitating our access to effective, modern therapy, which today can be used by patients in other European Union countries, the patients explain. Unfortunately, in response to our letter, the Minister of He alth leaves us no hope of having access to the only effective treatment method for us. Although the therapy we are seeking is the only salvation for us today, the Ministry of He alth does not see the need for financing - they add. However, the attitude of the Ministry of He alth does not discourage patients from taking further action, thanks to the Support Group, patients feel mobilized to continue trying to improve their situation and to support other patients suffering from rare blood cancers. We are determined to fight for the right to treatment, because, like every sick person, we deserve care and protection from the state - patients argue. The support group is open to people seeking help.

This will be useful to you

The support group is open to people seeking help. Patients who want to join the group can contact its representatives via the website www.grupawsparciampn.pl, there they can also get more information about myeloproliferative neoplasms.

Source: press materials of the Myeloproliferative Cancer Support Group

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Patient's kit