Thirty-one-year-old Nabila Husseni of Ahmedabad is campaigning to set up food trucks for those with haemophilia like herself, so that haemophiliacs can lead independent lives.
Nabila Husseni, a quality analyst and a content developer at an IT company, suffers from a rare disease. When she was eight months old, she fell off the bed and started bleeding from her lip. No matter her parents’ efforts, the bleeding did not stop. Haemophilia was almost unheard of back then, and plasma transfusion was not a common way of treatment. Doctors gave her blood, not knowing better. Eventually, she was diagnosed with haemophilia, a rather uncommon bleeding disorder.
Haemophilia is an incurable, genetic disease in which patients bleed for longer than usual because the blood does not clot. This happens when blood is deficient in clotting factors. Of concern, then, are deep cuts, especially in the knees, ankles and elbows. Internal bleeding in haemophiliacs can be life-threatening. Nabila suffers from Factor V deficiency. Common symptoms of Factor V deficiency are bruising, bleeding under the skin, and oral bleeds. Fresh, frozen plasma transfusion is the only possible treatment.
“My childhood was not like that of other children,” says Nabila. “I was not allowed to play in the garden with my friends. At school, my principal used to hold my hand and make me sit beside her at lunch so that I did not run off to play.”
In November of 2016, Nabila met with an accident on her way to office. The tibia in her left leg was fractured. Because of her condition, surgery was impossible. So, Nabila had to keep her leg in a cast for three-and-a-half months. This gave her time to reflect. She decided to start something of her own that would be suited to her condition, and, at the same time, would allow her complete freedom over her own work.
She has seen other haemophiliacs suffering at their jobs due to spontaneous bleeds, or feeling depressed about their health. Nabila is on a mission to set an example. She believes that despite being a haemophiliac and a woman, she can make her voice heard and lead a normal life without constraints.
She has started a crowdfunding campaign to set up food trucks that will be owned and run by haemophiliacs like herself. Her partners in the initiative are Nayan Prajapati and Amit Khuva, both of whom are Factor VII deficient. While Nabila was healing after her injury, she managed to contact other haemophiliacs in her city. “I am in touch with many of them,” she says. “I call them my blood brothers.” At first, some of her friends were shocked by her brave idea, but they soon joined hands.
These food trucks are dreamt of to provide economic rehabilitation to patients of bleeding disorders. The disorder is complex and treatment is costly. It becomes difficult for employers to manage haemophiliacs, and, therefore, more problematic for haemophiliacs to get jobs.
“Finding a fulfilling career that can also support your health is an important goal,” says Nabila. “The more strenuous work a job entails, the more likely it will be to cause bleeds. Jobs, where you are on your feet all day, lifting heavy objects, or constantly travelling, may make it harder for you to minimise bleeding-related complications,” she continues.
So, Nabila’s business will have three partners to one food truck. That way, no one individual will be under much stress, and they will each have a way to support themselves financially.
Ever since recovering from her injury, Nabila has been working on this idea. She and her friends have done a survey of some food trucks and identified the preliminary needs of such a business – food licence, vehicle licence, and others. They have designed the truck and its logo, and are now in process of collecting funds to implement their designs.
The team plans to begin their endeavour as soon as they have adequate financial resources. The idea also is to spread awareness about haemophilia as Nabila feels that people will automatically ask what the disease is when they purchase from the trucks.