World Haemophilia Day 2017


World Haemophilia Day

17th April 2017

As the sun rises and the haemophilia world awakes, the activities to mark World Haemophilia Day 2017 will bring fun, laughter and joy. The kind of day everyone can appreciate, bleeding disorder or not. It is also a day of mixed emotions because those who have access to treatment will celebrate their lives, their abilities and certainly their freedom to be who they are.

World Haemophilia Day for many others is so far removed from this utopia they might as well be living on the moon.

In this first Haemosexual Statement for World Haemophilia Day, I want to focus on those who exist, dreaming of freedom, dreaming of living a life without pain.

I would like to tell you about my friend Mohamed:

A father to three young boys, two with severe haemophilia. He and his desperate family live in a refugee camp on the outskirts of Nairobi, Kenya’s capital city. There they struggle to survive with limited support along with an ever growing fear for their son’s safety and lives. We know Mohamed’s family are not an isolated case as horrifically their suffering is repeated many times across Africa and the developing world.

In Egypt, corruption is so widespread, haemophiliacs are unable to have the treatment they need due to it being sold on the black market for huge profits. Insurance companies across the country will not accept those with bleeding disorders, leaving their bleeds untreated and lives at risk. Each day my proud friends are becoming more crippled, desperate and denied their right to life by those seeking to make money.

Across the Middle East in the war torn provinces of Pakistan my friends go without treatment because deliveries fail to arrive. Abandoned families place their lives in the hands of those able to reach out for education via Facebook and Google. They must try to help themselves without the knowledge or the resources to achieve the basics.

However, this fledgling approach to supporting people with haemophilia is far superior compared with some other countries in the region. We cannot forget those currently living in war zones who cannot access any medical assistance and certainly no hope of haemophilia treatment. For us to be in a position to offer something would be a start.

Genetic blood disorders existing across some Gulf countries were historically not recognised leading to major problems for both residents and visitors. With government thinking so detached the prospects of dialogue appeared impossible. Thankfully attitudes are changing, discussions are taking place along with scientific advances being developed across the Gulf. Awareness activities are now well attended.

Finally, I would like to hold out my hand of friendship to our fabulous global community. To all those with a bleeding disorder who identify as LGBTQ, who feel they must hide because we have not yet reached a time where everyone is treated as equal. To all those who feel they have no voice, detached from the global haemophilia community due to a lack of representation. Together we can all fight stigma, discrimination and intolerance through education changes can lead to equality.

On this World Haemophilia Day I send you a message of love and hope.