Thal at Cal: Nutrition DeCal, by Mohith Subbharao

Mohith Subbharao

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. .

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Mohith Subbarao is a student in the Fall 2014 "Thal at Cal" DeCal on thalassemia. This article is his independent project for the course.

Children's Hospital Tour - A Student's Experience, by Mohith Subbharao

Mohith Subbharao

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 long-term 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, psychosocial 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.

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Mohith Subbarao is a student in the Fall 2014 "Thal at Cal" DeCal on thalassemia. This article is his independent project for the course.

Perspectives Newsletter

The new Summer/Fall 2014 edition of Perspectives, the newsletter of the Northern California Comprehensive Thalassemia Center is available as a PDF and can be read online here.

If you would like a free print subscription to Perspectives, please contact Laurice Levine: Llevine@mail.cho.org or sign up online.

28th Annual BBQ Steak Dinner to benefit the Cooley's Anemia Fund

28th ANNUAL BBQ STEAK DINNER

SPONSORED BY

ICF Branch 108 

and 

THE SABATELLA FAMILY

for the

Italian Catholic Federation,

Los Angeles Archdiocese District

TO BENEFIT THE

COOLEY'S ANEMIA FUND

SUNDAY – JULY 20, 2014   4:00 P.M.

766 MONTEREY RD

SOUTH PASADENA

(626) 379-0629 / 372-7812

(CALL FOR RESERVATIONS AND/OR DIRECTIONS

by July 13th per favore!)

$25.00 PER PERSON

For 28 years we will have come together and enjoyed a great afternoon with FRIENDS and great food! Great Raffle too!

Heart 2 Heart Block Party April 26th

Dear EHI Committee Members and Community Partners,

On Saturday, April 26, from 10:00 a.m. to 3:00 p.m., Heart 2 Heart will be hosting a neighborhood celebration for the fourth anniversary of the program’s Mobile Health Van. Along with door-to-door blood pressure screenings, they will be offering several community resources, as well as hosting a  National Prescription Drug Take-Back Day, in partnership with the DEA office.

For more information about Heart 2 Heart and their Block Party, including the location of their event, please refer to the flyer attached to this e-mail.

Thank you!

Regards,

Camille Gonzales

Camille Gonzales

Interim Community Outreach Assistant

Ethnic Health Institute

3012 Summit Street, Third Floor

Oakland, CA 94609

510-869-8223

GonzalC92@sutterhealth.org

http://www.altabatessummit.org/ehi/

Are you looking for the perfect gift for your Valentine?

Do you have an hour to spare?

Would you like to Save a Life?

If you answered yes to any of these questions, then please consider donating blood in honor of Valentine’s Day? There is no better way to express love to  your Valentine than giving the gift of life.

There are four types of transfusable products that can be derived from blood: red cells, platelets, plasma and cryoprecipitate. Typically, two or three of these are produced from a pint of donated whole blood – therefore each donation can help save up to three lives.

For more information and/or to make an appointment to donate blood:

American Red Cross:

http://www.redcrossblood.org/donating-blood

Blood Centers of the Pacific:

http://www.bloodcenters.org

Thalassemia Patient and Family Conference 2014

The thalassemia patient/family conference held on January 18, 2014 at Children’s Hospital Oakland was a

success!  Approximately 45 patients, families and professionals attended to hear experts speak on the following:

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Thalassemia Care and Research Update:
Elliott Vichinsky, MD
Children’s Hospital & Research Center Oakland:

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Chelation:
Ashutosh Lal, MD
Children’s Hospital Research Center Oakland:

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Health Insurance Update/Affordable Care Act:
Wendy Murphy, LCSW
Children’s Hospital Research Center Oakland:

Sabahat Rahman
University of California Berkeley:

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Bone Marrow/Stem Cell Transplant/Gene Therapy:
Mark Walters, MD
Children’s Hospital & Reseach Center Oakland:

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PHRESH Grant Update:
Lisa Feuchtbaum, DrPh, MPH
California Department of Public Health:

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A children’s program for ages three and older was run by two Child Life specialists. Activities included developmentally appropriate teaching on thalassemia and health, medical play, and art projects such as sand art, picture frames and beading to name a few.

Conference attendees enjoyed lunch catered by Gira Polli of Mill Valley and dined al fresco.
Special thanks to our speakers for sharing their expertise.

We would like to thank our Volunteers:

• Sofia Dhanani
• Stacey Wong
• Kelly Stewart, MA – Children’s Program
• Nenna Okezi, MA – Children’s Program

Special thanks to Nancy Anderson and Apo-Pharma for making this conference possible.