They were told that I was born with a genetic blood disorder called thalassemia, which, as they soon learned, is very prevalent among people of Indian descent. My parents found out that they were both unknowingly carriers of this disease. They were caught off guard and were told to fear the worst, which was that I would not live past 10 and that my short life would be filled with constant trips to the doctor and numerous medical procedures.
In India, it is estimated that among certain ethnic groups, one in seven carry the trait and over 10,000 babies are born with thalassemia a year in India, according to the Indian Journal of Pediatrics. If two people who carry the trait for thalassemia have a child, there is a one in four chance with each pregnancy that the child could be born with the major form of the disease.
I was born with this disease and am now 35 years old. Many strides have been made in the treatment of thalassemia that have allowed me to live way past my expected lifespan, but life is still a constant struggle.
As part of my treatment, I get blood transfusions every two weeks and have required blood since age 3. This is necessary because my body is unable to produce healthy red blood cells. While getting blood is beneficial, it comes at a costly price. The very thing that is supposed to save my life is also literally killing me. With each unit of blood I receive, I get a finite amount of iron that my body cannot absorb. The iron gets deposited in the numerous organs of the body such as the pancreas, pituitary glands, liver, and ultimately the heart. This iron is very toxic to the body and causes organ damage that leads to numerous secondary complications and ultimately cardiac failure.
When I was 8, a drug called Desferal was developed that was able to remove the iron from the body. Prior to the development of this drugs patients died at a very young age because the iron in their bodies so severely damaged their internal organs. Despite the blessing of this drug, using it is time-consuming and painful as it is infused under the skin over an eight- to 12-hour period daily and can cause painful and severe swelling. Because of the difficulties with this medication, getting the iron out completely is difficult and the iron buildup for me has led to the development of diabetes, osteoporosis, and liver damage. Living with thalassemia is a constant battle with medication in order to ensure that I lead a healthy and long life.
My generation is the first generation of patients living into their 30s and 40s and I often wonder what my future holds. I remain hopeful as more advancements are made every day.
The number of thalassemia cases in the U.S. is growing as more people are emigrating from Asian countries. In Alameda County, the Asian Indian population is more than 47,000 and has increased by 209 percent in the last decade, according to the Asian and Pacific Islander American Health Forum. Similarly, 25 percent of all new cases of thalassemia in California are amongst babies of Asian Indian descent, as cited by the journal Pediatrics.
Getting tested for thalassemia is very simple and can be done by your local physician. All you need to find out if you might be a carrier of thalassemia is a Complete Blood Count (CBC). A CBC can tell you what your MCV value, or Mean Corpuscular Volume, is. If it is below 75, this could be indicative that you carry for the trait for thalassemia. You will then need to have a Hemoglobin Electrophoresis, which will conclusively tell whether you carry the trait for this disease.
While the treatment for thalassemia has gotten remarkably better since my birth, not much has changed in terms of public knowledge and prevention. Couples are still unaware of thalassemia, despite the fact that testing is very simple.
As an Indian, it is my hope that you read this essay and get tested so that you can be informed about this disease, which has so greatly impacted my life.
There are excellent resources for the treatment and diagnosis for thalassemia at Children’s Hospital Oakland Comprehensive Thalassemia Center, and at the Children’s Hospital Los Angeles.
For more information on getting tested for thalassemia, contact Elliot Vichinsky, M.D., at (510) 428-3885, Ext. 4398,www.childrenshospitaloakland.org/healthcare/depts/hematology_services.asp(Bay Area); or Susan Carson, PNP, at (323) 361-4132 (Los Angeles).