Susanna immediately attended two years of community college and then graduated from Santa Clara University in 2014. Once they obtained citizenship, Susanna’s parents sponsored her, and in her mid-30’s she obtained her green card. It keeps you from living,” she said.Īs she did her best to stay healthy, her parents worked hard to pay for her health expenses, and they were able to eventually obtain their green cards, offering them a pathway to U.S. on a medical visa, which prevented her from attending college or working. Though the treatment brought her good health, it didn’t help Susanna navigate the hurdles of settling in the U.S.
Susanna Raj sits with her father Antony and mother Alphonsa at their home in California. Three times a week, she takes injections of Actimmune, a treatment she’ll use for the rest of her life to stay healthy. Today, Susanna lives in Mountain View, California, with her parents, who are retired. It reduced the amount of time in the hospital and decreased the severity of illness. “It’s like a booster for your immune system, for the parts that are still working,” she said. to be evaluated and investigated for possible treatment plans for CGD with Actimmune.”Īfter tremendous logistical and financial struggles with visas, Susanna and her parents immigrated to the United States in 1995 to take advantage of the treatments. “We received an invitation from Stanford to come to the U.S. “By this time, it became very clear to my doctors in India that better and easier access to new treatment options and immediate access to experts in the field of CGD was vital to my continued survival,” said Susanna. Susanna’s parents managed to find a sponsor who donated the expensive drug, and Susanna’s 8-month lung infection resolved within days. The following year, however, brought news of a promising new treatment, interferon gamma-1b, which could strengthen the immune systems of people with CGD. Intravenous antibiotics had little effect, and antifungals resulted in side effects worse than the infections. Susanna spent most of 1993 in the hospital with double pneumonia and lung lesions. The infections were becoming heavily resistant to powerful antibiotics and were taking an enormous toll on my organs.” “I was admitted to the hospital for periods of up to five days to five months. I was homeschooled mostly, but as the infections increased, I was unable even to continue that,” said Susanna. I came down with many cases of bacterial pneumonia of the lungs and was in and out of hospitals. “Progressively, over the years, my health deteriorated. Though she lived indoors in isolation, Susanna still developed infections that doctors treated with heavy antibiotics. Susanna’s father worked, and her mother stayed home to care for her. My parents started over with the help of family and friends.” “With most of our hopes dashed for a possible cure or treatment, we returned to India completely broke. “There was no treatment anywhere at the time, just preventative care,” explained Susanna. Though the family had a diagnosis for their daughter, keeping her healthy would be a struggle. Savio and Sharmila passed away at age 6 from persistent infections.ĭesperate to discover the reason for their daughter’s persistent illnesses and find perhaps some insight into the deaths of their other two children, the family sought a diagnosis in Canada upon their doctors’ recommendation in India.Īfter just a month living abroad, the family learned the cause of their daughter’s poor health - chronic granulomatous disease (CGD). Susanna Raj, back center, is shown with her family, from left, brother Savio, father Antony, sister Sharmila and mother Alphonsa at their home in India in the 1970s.
0 kommentar(er)
