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Telemedicine is the new bet of the Federation of Hemophilia of the Mexican Republic as a tool for the intervention of a specialized psychology, essential when a hemophilia patient receives his diagnosis.

To take advantage of the resource of technology, for the first time in Mexico a 40-hour course-workshop on Hematological Psychology was launched, with the name: Psychological intervention in comprehensive care in people with coagulation disorders. The objective was to provide the necessary resources for the health professional to develop skills and competencies that allow them to understand and attend to the priorities of the person with hemophilia or another coagulation disorder and/or family.

In this way, a responsible and objective intervention is sought, promoting the health and quality of life of people living with this disease, thus protecting their mental health. With the support of five highly prestigious institutions, more than 75 professionals from various countries were trained. From there emerged the International Network of Comprehensive Hematology Psychology (INPHEI Network).

It is noteworthy that at the time of diagnosis there is a great change in the life of the patient and their family, which causes anguish, despair, sadness, helplessness, among other reactions. Added to this is that the treatment also generates different psychosocial responses, which sometimes interfere with therapeutic non-adherence, which leads to an increase in variables that make this population even more vulnerable.

How was the INPHEI Network born?

After this event, the need arose to share knowledge with specialized professionals from different countries to implement strategies that would improve and facilitate the well-being and quality of all aspects and spheres of patients with hematological diseases, under a holistic and integrating vision. Thus, the International Network of Comprehensive Hematology Psychology (Red INPHEI- in spanish) was formed, led by Ezequiel Martínez, advisor to the Federation of Hemophilia of the Mexican Republic and David Cuartas, manager of the Antioquia League of Hemophiliacs, in Colombia.

The members of the INPHEI Network are a group of as many interesting, creative and intelligent people, as many as the creation and execution of the INPHEI NETWORK may need. “We will go on a journey from the abstract to the concrete, we will become a mastermind in favor of inspiring lives with what we know and are passionate about,” they comment.
The members of the Network expressed that it is an ethical responsibility to acquire more and better knowledge, which is why in December 2021 more than 35 specialists from different countries were summoned to the First United Inspiring Life Academic Meeting.

There and after the words of Mr. César Garrido, president of the World Federation of Hemophilia, and the nurse Minerva Cruz Ramírez, president of the Federation of Hemophilia of the Mexican Republic, those invited made contributions, which allowed to complement the knowledge, in addition to favoring the development of skills and competencies of professionals, in order to contribute effectively to the well-being and, therefore, to the quality of life of all patients and their caregivers.

On the other hand, patients and relatives learned more resources and strategies for self-care, coping, resilience and therapeutic adherence. In this way, the “first stone” of the INPHEI Network was laid.

This year the group of specialists met again on January 27 and in one voice they expressed: “Let us therefore unite all our skills and abilities to give, to serve and to create opportunities where others have not seen them and in which we will be transcendent. in one of the many important meanings of life.

This shows that the members of the INPHEI Network have an unstoppable enthusiasm and go for more in this process of continuous improvement. This is one more reason for the Hope & Life USA Foundation, which cares for a significant number of Hispanic or Latin American patients with hemophilia, to strongly support this project, which strengthens knowledge and developments in order to guarantee a better quality of life every day. and care for those suffering from the disease.

It is clear that comprehensive care promotes physical and psychosocial health, while decreasing the morbidity and mortality of people with hematological conditions.

Specialized psychological care, essential

The INPHEI Network concluded its meeting commenting: “Mahatma Gandhi already said it: health is the most precious good, and not gold or silver. Who can not appreciate having a state of complete physical, mental and social well-being?

It is important to remember that hemophilia, being an inherited disorder, generates a high emotional burden and stigmatization also in mothers, as they sometimes feel singled out by neighbors, friends, and even by some members of their family, and experience episodes of pain and bleeding in their children. Guilt usually prevails.

Likewise, there may be social rejection of their children due to ignorance and visible symptoms, which condition disability in most cases and limit opportunities for personal and professional development, especially in populations with low academic and economic levels.

The intervention of specialized psychology aims to help people understand their problems and solve, reduce or overcome them. Similarly, they help prevent these from reappearing, through the application of techniques.

In other words, in all people, mental, physical and social health are intimately integrated. With the growing knowledge about this interdependence, it becomes more evident that mental health is a central pillar in the general well-being of individuals, societies and nations. For this reason, we invite you to be attentive to the new courses and workshops that will be held this year, both for patients and family members and for health professionals interested in updating themselves on the knowledge proposed by this new network.

Ezequiel Martinez, Red Inphei.

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