"Thal at Cal" DeCal - Spring 2014
by Mohith Subbharao
October 14, 2014
A few weeks ago, I had the chance to tour the Children’s Hospital Oakland, specifically the Thalassemia Comprehensive Center. It’s not how I usually spent my Friday afternoons, but it was without a doubt a worthwhile experience. I left the hospital in awe of the hardships that Thalassemia patients go through and inspired by the doctors who have worked to help with these hardships.
I had never heard of Thalassemia before coming to UC Berkeley, and only learned about it by scrolling through the numerous “decals”, courses taught by students, offered at Berkeley this semester. Now I am shocked that I had not heard of this disease, especially since affects so many people around the world in such a harmful and longterm way. Touring the hospital and seeing children and their parents really made me respect everything they are going through. Along with dealing with the daily stresses of common-day life, they also have to learn how to survive with a disease that makes common-day life so much more aching and stressful. With such a complicated disease, there is so much these patients have to worry about: blood transfusions, iron overload, bone deformities, practical health issues, pyschosocial problems, and much more.
That is where Children’s Hospital Oakland plays a huge role. It is amazing that the hospital has all the aspects needed to make the lives of Thalassemia-diagnosed patients livable. A patient doesn’t need to run around to several different hospitals to manage all the wide-ranging issues of Thalassemia, especially when those hospitals may not be very informed on the complexities and nuances of the disease. Because the services provided by Children’s Hospital Oakland are disease-specific, the doctors there genuinely care about their patients. If only more hospitals sprang up across the country following this model, we could better combat the disease known as Thalassemia.
For any person, nutrition and exercise are necessary to maintain a healthy lifestyle and succeed in all aspects of common day-to-day life. For someone with Thalassemia, these things are even more imperative. Without proper nutrition and regular exercise, the symptoms of Thalassemia patients will only get progressively worse. However, if Thalassemia patients can make extra efforts to dramatically improve their nutritional intake and exercise habits, their symptoms may actually become less severe than the average patient.
Dr. Ellen B. Fung, PHD RD CCD is an Associate Research Scientist at the Children’s Hospital & Research Center, Oakland. Through her research, she has discovered a vast amount of information that all Thalassemia patients should know. There are several nutrients humans need every day to maintain a normal lifestyle. Dr. Fung’s research has found that Thalassemia patients are often deficient in many essential vitamins (Fung Lecture Slide 8). To combat this, Dr. Fung advises patients to take multivitamin supplements daily. Fung also stresses the importance of taking extra Vitamin D and not taking any iron supplements (to avoid further increasing chance of iron overload). She adds that many Thalassemia patients suffer from low bone mass and that additional zinc supplements should be taken to help combat this.
In addition to her research on nutrition, Dr. Fung has also stressed the importance of physical activity. She has found that “exercise capacity is reduced in [Thalassemia patients], due to anemia and iron-mediated cardiotoxicity” (Fung Lecture Slide 46). Because of this, she advises that Thalassemia patients should work even harder to make exercise a regular habit. With exercise, patients can help maintain body weight, increase bone mass, improve mood and decrease depression (Fung Lecture Slide 44). Obviously, Dr. Fung understands how tough this may be so she advises patients to work their way up. She believes that “patients should start with small attainable goals, work up to 30 min/day 5x/wk…make it fun and something they can stick to” (Fung Lecture Slide 55).
Thalassemia is a disease that patients have to deal with throughout their lives. However, if they can follow Dr. Fung’s advise on nutrition & exercise, they can significantly improve their day-to-day lifestyle and make the effects of Thalassemia less severe.
All information about Nutrition & Exercise is summarized from Dr. Fung’s lecture, “Nutrition & Exercise”, given at the Thal At Cal Decal course on October 6th, 2014.
Mohith Subbharao is a student in the Fall 2014 "Thal at Cal" DeCal on thalassemia. This article is his independent project for the course.