Voices in the fight: Shamsiya

Shamsiya

Shamsiya’s Story 

“At night, when I hear the sound of any vehicle stopping near my house, I feel so scared. I think this is somebody bringing more bad news. I am worried about my father,” narrates Shamsiya as she bursts into tears.

Shamsiya is a citizen of Tajikistan. Over the course of two decades she has watched nine of her family members succumb to the harrowing consequences of tuberculosis. Today, Shamsiya and her father are the only members still alive out of a large family who were once living happily before the killer disease, TB, found its way into their lives.

Shamsiya’s family knew very little about TB before 1994. It was in this year that her eldest sister suddenly began to vomit blood and was immediately taken to hospital.  One and a half months later and Shamsiya’s sister unexpectedly died.

Just over a decade later and the family’s troubles with TB returned. In 2006, both Shamsiya’s mother and her 24-year-old brother fell ill with a cough and a fever. Together, they made their way to the doctors in Dushanbe where they were diagnosed with TB. Tragically, within just over a month of one other, both her mother and brother passed away. The same disease that had killed Shamsiya’s eldest sister had now taken her mother and brother too.

The story of Shamsiya’s family would be tragic enough if it ended here. However, the disease soon caught up with two more members of the family. Bahriddin and Bibigul, siblings of Shamsiya’s, also succumbed to the disease.

Shamsiya sighs and pauses, as she often did while narrating this bitter story. She continues and her voice is close to tears: “Bahrridin was discharged from hospital after six months but died just two days later at home. Bibigul too passed away soon after being discharged”.

The misery for the family further expanded as time went on. Between 2007 and 2014, Shamsiya lost her remaining four siblings. One of these siblings was diagnosed with multidrug-resistant TB (MDR-TB) and was put on treatment. This was terminated as a result of her liver swelling and the drugs taking too much of a toll on her body. Her father lost four more children. All were below the age of 40 when they passed away, some barely 20 years old.

These days, Shamsiya spends as much time with her father as she can. She cleans the house, the yard, and helps her father with his bee farming. Her father is also suffering from the consequences of TB. “The other day he didn’t recognise me. At times he suddenly stands up and moves around the house, saying he hears the voice of his children. I have to be with my father. Now I’m his daughter, I’m his son, I’m his mother and I’m his father” says Shamsiya.

You can hear the heartbreak that comes from losing nine family members in Shamsiya’s voice. Losing her family in such a scale is a misery that should shock and sadden many. This even truer considering that TB is a disease that is both preventable and curable. No family, anywhere, should be as afflicted as Shamsiya’s but sadly this is still the case.

It has not just been the emotional burden that Shamsiya and her family have had to bear. The family also struggled financially and had to work hard in order not only to make ends meet but also to purchase the medicines necessary for treatment.

No family should have to bear the financial and mental burden, many of Shamsiya’s siblings were working hard along with her father to support the family financially through treatment. The family had to find money to continue the treatment for some of her siblings. All the money they earned was saved for medicines, even when they needed food. No family should be impoverished while seeking treatment for a preventable and curable disease.

This story should give us pause to think of how to mobilise the political and financial will to stop the prevalence of TB in our societies. It is all our responsibility to stick together to eliminate TB. Not only is increased funding and commitment necessary from the Government, but also the participation of other bodies, public organisations, activities, community and religious leaders, is a urgent must. Only by unified and common means can we defeat TB.

Source: TB Europe Coalition