To write about my experience in the Maldives for International Thalassemia Day, May 2006, I must first introduce you to my friend and colleague, Shilpa. Some of you already know her in person or through our group. In our MSN group, she used the name Shikha and on MSN has been known as Sneha. She is a thal major in her 30’s and has been both an influence and an inspiration for me during the time I have been involved in this group.
I first met Shilpa at a group chat in April, 2003. This was my second chat, the first, being the chat at which I met four Maldivians who would become dear friends of mine. Shilpa too, welcomed me into the world of thals and we soon began to regularly talk on MSN. I was fascinated to learn both about her homeland of India and also her experience of being a thal in a country where treatment was virtually unheard of in her early years. She told me about her father, Ramesh, who had been most responsible for her survival. Although told that his daughter would never survive, Ramesh refused to accept this and did everything in his power to make sure that this would not be true. Ramesh sought every piece of knowledge he could find about thalassemia and its treatments, which at that time consisted mainly of transfusions.
When I visited India, Ramesh told me the story of how, in the early 70’s he had heard that the famous Dr Weatherall was there in India and he sought him out, nearly missing him entirely, but finally jumping into a car with the doctor, as they headed to the airport. He learned everything he could from the doctor and then continued to pursue any knowledge he could to keep his young daughter alive. Shilpa attributes her existence to the efforts and determination of her father, and I have often seen this same determination in her.
As I grew to know Shilpa, I learned what life for a thal was like in a country where resources were few and hope was near non-existent. I learned about not only the physical struggle to survive but also the immense social implications of being a thal in a world that did not believe a thal could survive. There were two main reasons I got involved with the world of thal. One, of course, was Lisa. The second was Shilpa. It was Shilpa who made me understand what life as a thal was like and inspired me to give what I could to this group and to thals in general.
Shortly after we became friends I asked Shilpa if she would be willing to do a post with me about chelation compliance. The post would be done in an interview style and a main aim of the post was to help me understand the how's and why's of compliance. After working with her on this post I realized that we complimented each other quite well and that there would be much potential in the future. As time passed we talked extensively and I began to learn a great deal about the psychological and social issues related to thalassemia. In addition, we became best friends. Over the past few years, Shilpa has been responsible for the topics of many posts I have done. She has raised many questions that I have then brought to this group.
In October, 2005, I had the opportunity to attend my first thalassemia conference, which took place in India. I wanted to go to India for my first conference to try and bring more attention to the needs of thals in developing nations and Shilpa’s parents were kind enough to host me in their home. At this conference, I saw Shilpa talk about the expectations of a thal in India. The issues she raised set off a great debate at this conference and I realized that what I had thought about Shilpa was true. While most conference speakers addressed medical and research issues, Shilpa touched upon the issues at the forefront of the minds of thals, themselves. I had seen much potential in Shilpa and now saw this potential being realized.
When I was first invited to the Maldives, the organizers planned to also bring Miaki from Australia. I had introduced her to some of the girls in Maldives who wanted to know more about the possibility of having children, and she had been extremely supportive and informative, which had a very positive effect on their morale. Miaki was a great choice, as her own personal experience was one that could offer much to those in Maldives. Unfortunately, Miaki was currently going through some temporary health issues that prevented her from flying, so a trip to Maldives was out. I immediately suggested Shilpa, as her experience in a developing country closely paralleled the Maldivian experience and her grasp of issues in her talk about expectations was so relevant to the situation in the Maldives.
The results in the Maldives were well beyond anyone’s expectations and will be the subject of following posts. I am very proud of Shilpa and all were very happy with her contribution and also her personal attention to the individual patients in the Maldives. I am pleased to say that Shilpa is now both my friend and colleague and that we make a great team. We both look forward to future collaborations and hopefully a return visit to our friends in the Maldives, where the work has only begun.
Thank you, Shilpa. Without your inspiration, I would not be doing what has become the most important work of my life.
