Maria + Sikandar

Born October 1994 and May 1993 | Northridge, CA

Living with Beta Thalassemia

“Everything that has happened to me in life is because of this disease. All these obstacles and all these paths I've taken, are because of this disorder. It is a part of me.”     —Sikandar

Traveling to Dubai for treatments was a regular event that Maria and Sikandar remember well. They enjoyed the bustling city, the shining skyscrapers, and seeing extended family, but the true purpose of these trips was to go to the hospital and receive blood transfusions. Born in Peshawar, a city in northwest Pakistan, finding adequate care for their beta thalassemia, a rare, inherited blood disorder, was becoming impossible. “I would get sick from the transfusions,” recalls Maria, who recounts the absence of any filters for donated blood used in Pakistan. “They didn't have the best sanitary standards.” The trips to Dubai were a costly attempt to secure better care for their condition, which if mismanaged could be fatal.

“The life expectancy for people with beta thalassemia was 12, some died sooner,” says Sikandar reflecting on the local care available to him as a child. Those with the blood disorder in Pakistan were at high risk for early death. Often visibly affected, people with the condition in Pakistan were pale, anemic, and displayed enlarged spleens and stomachs. “The biggest issue was the amount of blood available, the dated technology, and the inability to detect the buildup of iron in the heart and brain, which is a result of regular blood transfusions.”

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Both Maria and Sikandar inherited the autosomal recessive condition heterozygously, putting their symptoms on the major end of the beta thalassemia spectrum. “I inherited copies of the malfunctioning beta globin gene from both of my parents,” says Maria. “They were both carriers.” With a constant need of more hemoglobin, Maria and Sikandar exhibited fatigue, anemia, and battled constant stomach pains from an early age. Rafiqa, their mother, became determined to help her two affected children get the best care available. However, the flights to Dubai were enormously expensive and were not a sustainable solution.

 

In Peshawar, rumors began circulating about a cure for beta thalassemia available in the United States via a jadugar, the Pashto word for “wizard” or “magician.” “My mom would hear stories from her friends that there's a wizard in America who can cure you,” says Maria. Full of hope and determination, Rafiqa reached out to family who lived in Florida and began making plans to travel to the US, to find the jadugar, and cure her children's beta thalassemia. “She imagined a wizard with a magic wand who would save us,” recalls Sikandar. Imaginative or not, Rafiqa’s determination drove her to obtain visas for her family. When Sikandar was seven, and Maria was six, the family made the epic journey from northern Pakistan to Florida in search of a cure.

“My mother always put us first,” reflects Sikandar. To this day, he and Maria have never taken their mother’s fortitude and perseverance for granted. “No one wants to leave their family—their home—without knowing anyone,” reflects Maria. “It was her dream to meet the magician who could cure our thalassemia.” However, shortly after arriving in the US, they realized there was no jadugar or quick fix to be found.

 

“I have a stubborn mom,” says Sikandar with a grin. Hoping to make the best of the situation, Rafiqa learned about a larger Pashto-speaking community near Los Angeles, as well as some of the world's foremost blood-treatment centers located there. As opposed to a cure, the family opted for better care and relocated once more, this time to the urban expanses of southern California.

 

Maria and Sikandar started visiting a large hospital in Los Angeles and found not only more sophisticated clinical infrastructure but also more understanding staff, some who even spoke Urdu or Pashto. “When I was in the hospital, I would get spoiled by the doctors,” remembers Maria affectionately. She was not used to the standards of care in the US nor the level of compassion practiced by her new physicians. She would sometimes spend several days in the hospital, but remained happy thanks to the kind staff. “They knew I loved potato chips, so the nurses would bring me bags and bags of potato chips, and my favorite little fancy shortcakes. At the hospital, I would only eat those chips and shortcakes.” Although Maria loved junk food and sweets, she's had to swear off what were once her favorite foods. “We have to be careful because we are predisposed to diabetes with beta thalassemia,” she cautions.

However, the language barrier in their new home was a challenge, especially for Rafiqa. “I was six when I moved to the US, so it was easier for me to pick up English,” reflects Maria. “But for my mother it was quite difficult.” Despite obvious cultural hurdles, Rafiqa managed to secure jobs, obtain a driver's license (something women seldom did in Pakistan), and make sure Maria and Sikandar received the best care they could—all while cooking, cleaning, and keeping house for four children. The kids became the translators for their mother, often advocating for themselves in medical settings.

The family's collective impression of the US had transformed: from the fantastic land of wizards and magical cures, to an infinitely complex, multi-tiered capitalist system—a puzzle that Maria and Sikandar were poised to unlock. “For us, the impression was that it was going to be easy,” says Sikandar. “But man, it was a little different. It's a land of opportunity, but you've got to figure out how to get to those opportunities.”

 

With support from their mother, neighbors, and medical professionals, Maria and Sikandar's lives began to settle as they attended school, mastered a new tongue, and excelled as students. Sikandar, as the oldest son, became very active in providing for the house, and helped Rafiqa with chores whenever necessary. “I was never afraid of going into the kitchen to help her out—to cook and clean, for myself or my siblings.” They adapted dutifully to their environment, embraced a different culture, and transitioned to a new life.

A visit to their house today reveals the beauty of this transformation and the distance this family has travelled—not just in the geographical sense, but also from adversity to fulfillment—all whilst maintaining their identity. Farah, the oldest sister, has married and bought a house nearby, where she has started a family of her own. Her home has become a sort of permanent hub for the family—a constant rotating cast of cousins and uncles grace the marble walls adorned with flags containing Pashto inscriptions. Laptops and smartphones juxtapose prayer rugs and gold-embossed copies of the Koran. And, Rafiqa continues to prepare strong chai tea, while waiting for her naan dough to rise—all necessary accouterments to her slow-cooked curries and meat dishes stewing in a crock pot for dinner.

Maria and Sikandar still live on the south side of Los Angeles where they both continue their studies. Maria, inspired by the care she has received, decided to apply herself to an MD program. Her inspiration to become a doctor comes from her desire to bring love to the profession. “You have to understand a patient's perspective,” she extolls. “As a patient, I know myself.” She wants to expand the level of compassion and care offered in hospitals to all patients. “That's the other half of treatment. It's not that you have to be cured, but it's about having that compassion.” She also considers taking her skills back to her home country. “If I'm able to, I will go back to Pakistan and other third-world countries that need that kind of care. I may not be able to cure all of them, but at least I can provide the passion and the care that they need.”

 

Sikandar continues to follow similar aspirations, although not exclusively in the medical field. He became enamored with the study of bioengineering, where he sees a merging of two ideals: the innovative technology of new treatments, and the entrepreneurial potential of new markets. “I like to do business,” he states. “Here, there is advanced technology and research like gene therapy, where they can take genetic code, modify it, and actually code it the right way.” He remains excited about getting into an industry that could directly ameliorate his beta thalassemia and potentially cure it—giving him the chance at becoming his own jadugar, with a steady paycheck.

 

Sikandar and Maria manage their beta thalassemia with blood transfusions every three weeks to keep hemoglobin counts high, and with prescription medications, to keep iron levels low. They also maintain a healthy diet and take copious vitamins to avoid other complications, a tactic they learned from attending thalassemia conferences hosted by organizations such as Cooley's Anemia Foundation. Learning to live with this condition has become treatment itself, according to Sikandar. “Of course [thalassemia] comes with symptoms and it comes with limitations. But at the same time, I just see it as another obstacle that's part of my life now, permanently. I don't look at it as a bad thing.” Far from seeing his condition as a disability, Sikandar has embraced the path of working within his limitations to take care of himself. “I'm always thinking what's my next step each day. I really take it cautiously, which matures me and makes me more of an independent person. It makes me well rounded.”

 

Both siblings see their faith as a key influence that has guided them through the difficulties of living with a rare disease. “In our religion, we are taught to always look below,” says Maria, explaining the Islamic principle of self-awareness—seeing yourself in the “middle” of a spectrum of have and have-nots and not coveting those with more than you, while giving back to those who have less—an ideal that has certainly come to define her and Sikandar's altruism. “I think about other people who are worse off; individuals who know they don't have a lifetime to stay here,” she says. “At least, I'm getting treatment.”

Farah processes down the stairwell holding Yashfa, the newest addition to the family. She has been crying loudly throughout the day after getting her round of vaccinations at two months old. Maria and Sikandar embrace their baby niece and take turns swaying her in their arms. Her life has brought the family boundless joy and one more reason to come together. Rafiqa meets them too, eager to partake in the loving, family scene. The innocence of the infant serves as a reminder that the future remains very much undecided for this brother and sister; that hope for a cure is still alive, and that new developments are advancing every day. In the meantime, Maria and Sikandar know that managing their condition, perseverance, faith, acceptance, and family devotion are what truly matter.  “Everything that has happened to me in life is because of this disease,” Sikandar says. “All these obstacles and all these paths I've taken, are because of this disorder. It is a part of me.”

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