Monday, February 23, 2009

Sickle Cell In India

This post is a contribution from Hari Prabhakar of the Sickle Cell Disease Center, at Gudalur Adivasi Hospital, India.

Sickle Cell Disease (SCD) is truly a global genetic disease, and there has often been a misconception that SCD is found only among those of African/African-American descent. In order to successfully manage the disease internationally and formulate global strategies, it is important that we understand the different types of challenges and lessons learned from sickle cell management from both the patient and provider perspective

As such, I would like to share with you our experiences in managing sickle cell disease amongst an indigenous population in South India, the lessons learned, and how we can use these lessons to improve SCD management in the United States.

Each year in India, 495,000 infants have congenital malformations, 390,000 have glucose-6 phosphorylase enzyme deficiency, 21,400 have Downs Syndrome, amongst the Adivasis population ((indigenous populations in India are also called Adivasis) 9,000 infants are born with Beta-thalassemia, and 5,200 have sickle-cell anemia. Due to inadequate diagnostic, management, and rehabilitation facilities, and lack of comprehensive knowledge/acceptance of the disease, the burden of these disorders among the Indian population is far greater than Western countries, and it is particularly pronounced among indigenous (Adivaisis) population in South India.

Adivasis, who are comparable to the Native Americans of the US, number around 10% of India’s population (around 100 million people!). They have been traced back to 3000 BC, and have genetic similarities to Australian aborigines and African tribes. SCD has the highest prevalence among this population, with up to 1 in 5 people being a carrier, and up to 1 in 20 having the disease.

As such, millions in India suffer and succumb to the disease, with little money, knowledge of the disease, or access to healthcare facilities to seek care. Due to a combination of social neglect, inadequate healthcare infrastructure and research, and lack of grassroots implementation and national policy, there are almost no comprehensive sickle cell programs in India, where it is needed most.

Much like in the United States, it is of utmost importance that those in India suffering from the disease are provided a voice and capability to seek care from one of the most despicable and significant genetic diseases on the planet.

Resources in India

Wednesday, February 11, 2009

Calling All People With SC Disease

Calling all people with Sickle Cell Disease to participate in a research study.

The study is sponsored by Ms. Phyllis Bazen, MSN, FNP-C, a Doctoral Candidate at the University of Rochester School of Nursing. Ms Bazen is the Study Coordinator.

The purpose of the study is to explore the most common stressors that adults with SCD cope with and to explore the effects that these stressors have on mood and/or quality of life perceptions.

People with Sickle Cell Disease have many things that bring stress; pain, depression, hopelessness, etc. etc. etc. We have to live on despite these stressors and try to have a meaningful, productive lives...anyway.

The best way to contact Ms. Bazen is the web site contact page, her cell phone, email, or 1-800-464-8668 (in US) See card below for information.

If you decide to participate in this study, you will be speaking with Ms. Bazen who conducts a one-on-one private (confidential) phone interview. In this interview, Ms. Bazen will ask a series of questions related to living with Sickle Cell Disease and related stresses.

The outcome of this study is to gather data related to the stress that Sickle Cell patients endure and find ways to better treat them (us).

Check out the web site at

We can all have our voice heard on this one.