Monday, March 23, 2009

Sickle Cell Sabbath

There is a lot of money to be made by non-profit organizations that support specific “diseases.” Patients, with those diseases, may or may not benefit from those organizations unless they seek them out. One thing that every patient with Sickle Cell disease can benefit from is the donation of blood.

I recently read an article about a young girl with Sickle Cell disease who has received over 400 blood transfusions in her short lifetime. She is now working with community churches to encourage donations as part of “Sickle Cell Sabbath.” This effort was directed to community churches because they are a symbol of goodwill and a pillar God’s love. Together with a local blood center, this young girl has begun a quest to ask churches for donations of blood, rather than money. A donation that we all know will be put to good use.

We can all learn a lesson from this young girl, who has moved past her personal struggle to enhance the lives of others. We can find creative ways to help people and meet their needs, as we care for our own. We can give money, if possible, and we can give love, always. We can also encourage the world to give blood and make a donation to someone’s life. xoxoxox

Tuesday, March 10, 2009

Sickle Cell In India – Part 2

This post is part 2 of a contribution from Hari Prabhakar, from the Sickle Cell Disease Center at Gudalur Adivasi Hospital in India.

The recent 2007 World Health Organization (WHO) and Thalassemia International Federation (TiF) report (see link below) speaks on the need for comprehensive sickle cell centers in developing countries to manage the burden of SCD, and also notes that in the USA, existing centers only cater to 18,000 of the 80,000 affected. In India, there are around 5 million carriers and up to 20 million affected, and most of those affected, primarily Adivasis, live in areas with little access to basic health facilities.

In the south Indian state of Tamil Nadu, in the Gudalur Valley of the Nilgiris District, there is a tribal (Adivasi) population of over 25,000 who have lived in the area for thousands of years. Until 1913, there was a high prevalence of malaria, which could explain why the sickle gene and sickle cell disease has persisted for so long. Within the community, historically mysterious deaths and suffering were regarded as “Doshams” or curses. There was almost no awareness or concept of genetic diseases.

In the past, hydration therapy and vitamin supplementation remained the primary means of dealing with patients at Gudalur Adivasi Hospital. The hospital has doctors, nurses, and health workers, a large percentage of whom are Adivasis trained from the community. Unfortunately, we didn’t have a good idea of the prevalence of the disease in the area.

After reviewing some of the existing literature, doing some internal studies, securing startup funds, and talking to some hematologists, we launched the Sickle Cell Disease Center at the Gudalur Adivasi (Tribal) Hospital. The platform of our Center, now 5 years in existence, has been to emphasize screening, treatment, education, and research, and to serve as a national model for SCD nationwide. Realizing the cost of management of the disease would be out of reach for the population, we decided to offer all services free.

The first step in ensuring the effectiveness of the program was to bring awareness of sickle cell disease to the local population. Thanks to the hospital’s longstanding presence and community outreach, we have been able to deploy the Adivasi health workers to educate, while also providing comprehensive services including Hydroxyurea, penicillin, and pneumococcal vaccinations. Unfortunately, the pneumococcal vaccine for children under 5 is not yet available, but thanks to public health professionals throughout the world, it will be available in India for our patients soon.

Every month, there are screening camps in the villages to identify patients and carriers, as well as presentations to villages on SCD, led by our health workers. Those identified as patients are brought to the main Center in Gudalur and given appropriate treatment according to their needs.

In the summer months, the monsoon season hits the area and make transportation a tremendous issue. The terrain and lack of roads in the area make it difficult for those who need to come to the main Center for picking up their medications and getting monthly tests. We have stocked the appropriate medications in 8 area Centers of the Gudalur area to enhance patient accessibility

As of now, we have screened around 6500 and have 185 patients, many of them who are non-Adivasi but come from a community called the Chetty’s who also have a high prevalence of the disease. There are still thousands more in the villages who have not been screened and are undetected, and we hope to reach them in the upcoming months and years. Genetic counseling is certainly an important part of the program, and we are working on deploying a Center and field-based program that is culturally sensitive and appropriate.

(see report from World Health Organization on Management of Haemoglobin Disorders)

Good luck Hari with your efforts in India….there IS hope.

Resources in India

Friday, March 6, 2009

Young People “Don’t Give Up”

I’ve heard too many stories about young people (ages 13-30) with Sickle Cell Disease who just give up on life. They believe they've gotten a bad deal from God, that life is unfair, and it's not worth living if it includes suffering.

In result, these young people drink alcohol, smoke cigarettes (and whatever else); and push their bodies beyond its limits. Trying to keep up with their friends, these young people end up in the hospital every time.

I know it’s hard to take care of yourself when you’re suffering and sad. I know that life seems unfair when you’re the only one with Sickle Cell Disease that you know. I know you want to live, like everyone else, and I also know how it feels to be 20 years old (with life ahead of you), and Sickle Cell dims your hopes for a future.

I have to tell you young people “Don’t give up!”

There is hope past the pain. There is life beyond blood transfusions. You’ve gotta just live. Live well and take care of yourself. I promise you there are happy days ahead….live to see them. There is wellness ahead….do your part to have it. There is a future for do all the things you want (or can) do. Live to see it.

I tell you this (young people), from one SC sufferer to another, cry if you want to cry…then wipe your tears. Get up, dust yourself off and get on with your life. Go ahead and dream big dreams, and then do whatever you can to make those dreams come true. God will do the rest.

When you get weak and you fall, get up, dust yourself off and try again, and again, and again, and again, and again. Then, just smile, because you're not going to be defeated by anything…. not even Sickle Cell Disease.