HealthLiving with hemophilia, 32 years making the invisible visible

Living with hemophilia, 32 years making the invisible visible

On April 17, the day on which the World Hemophilia Dayan open letter addressed to the disease was released to the world, which, among other issues of value, said the following:

“With hemophilia -or rather: in the face of hemophilia- there is no room for conformism. Each patient may be different, but there is one trait that defines everyone: it is their status of fighters aware of their situation, more or less serious, more or less delicate, but which always forces them to be alert”



The reality is that behind every fighter, not “hemophiliacs or hemophilia patients, there are people.” Therefore, society must become aware and fight against these types of diseases that have so little visibility. For this, the Andalusian Association of Hemophilia (ASANHEMO) has been making the invisible visible for 32 years.

Souleiman, a life with hemophilia A

At just 19 years old, souleiman suffer from a rare disease hemophilia Aa very serious ailment.

Those who are still unaware of the disease should know that hemophilia is a rare, chronic, hereditary and congenital ailment. Among other issues, it is characterized by the absence or decrease of some factors that are needed for blood to clot.

“My life is limited in many ways. Before, when I lived in Morocco, I did not have medication and when I fell I would take two or three weeks in bed, unable to move and in a lot of pain”Souleiman explains.

And it is that, this disease has a greater bleeding tendency, those that can be produced by a simple blow or spontaneously. Among them, the most frequent are joint hemorrhages which, if they occur repeatedly, cause deformities and muscle atrophies, among other ailments. In this way, it causes physical limitations and joint damage.

“I already have my treatment and now I am better thanks to factor VIII, which has helped me a lot to control my disease”. Hemophilia is a complex disease that must be treated through a multidisciplinary team.

Andalusian Association of Hemophilia

ASANHEMO was established in 1990 as a non-profit, non-governmental entity with the aim of supporting people affected by hemophilia and other congenital coagulopathies, carriers of the disease and their families, from a bio-psycho-social perspective, promoting their participation. in all areas of social life in order to achieve their full integration into society in a normalized manner.

It is a regional entity whose Headquarters is currently in the city of Seville, also having three Delegations located in Cádiz, Granada and Seville in order to welcome all the people of the Andalusian Autonomous Community who belong to to the collective.

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