Web 2.0 is a term that I only recently learned from my friend and blogger maven, Steve Hargadon, who was the one who originally setup our website. The existance of a term such as Web 2.0 presumes the existence of a term such as Web 1.0. However, World War I wasn't referred to as such until after World War II. Originally it was just "The Great War". Web 2.0, a term coined in 2004 by O'Reilly Media, describes a web-based medium where the previously passive end user now contributes to the content, just as I am doing right now.
This creates possibilities and experiences never before imagined. I had just such an experience last Monday.
There are many people that follow this blog. Often there are families looking for information regarding Amyloidosis and somehow stumble into our domain. In the past, everything we could learn about any given disease what relegated to what experts might publish in peer-reviewed journals. The audience was usually other professionals in related fields. Now we exist in a world where individual patients and caregivers can share their experiences, augmenting the overall understanding of a disease, now to a personal level. This has a unique and distinct value that was previously unavailable. This is especially poignant with a rare disease such as amyloidosis, given that it is unlikely to have a personal encounter with another amyloidosis patient randomly meeting them in the checkout line in the supermarket.
Felipe, from Los Angeles, Chile, which is about six hours south of Santiago, found our blog after his mother was diagnosed with amyloidosis. It took four years to arrive at the correct diagnosis in her. He found our experience useful, but needed more specific information to help in their decision-making. He sent me his email address and we began corresponding directly. After attaching his mother's medical records, I was able to connect with he and his wife, Marisol, in a virtual "house call' through Skype, and speak with them face to face . This was an absolutely incredible experience. The first half of the discussion was in Spanish and the second half was in English, and some of it was an admixture of both. I learned to speak Spanish as a missionary for my church in Buenos Aires, Argentina from 1978-80. Felipe, also a member of the church, served in the same mission in 1996. The common connections between humans on this planet far surpass our differences. We shared experiences about our families, our missions and of course the challenge of dealing with our common disease. I spoke as a patient, having personally experienced the throat swelling, hoarseness (his mother has lost her singing voice which she has employed these past forty years to bring the Spirit to church services) edema, nausea and weakness that she is now suffering through. I spoke as a doctor describing the risks and benefits of each of the treatment option available to her. She has AA Amyloidosis, secondary to multiple myeloma, (a cancer of the plasma cells), however, the chemotherapy regimens are the same for primary AL amyloidosis. I reassured them that the plan that their oncologist had prescribed made sense and was worth the risk of potential side effects. I could sense their relief.
I never imagined that I could have such a personal and intimate connection with a concerned family 6000 miles away. This is what web 2.0 has now created; a world in which we are all interconnected.
I know that there are some that fear the loss of the privacy in this wide open world of the web. Given the predators and conspiring men who have always taken advantage of each new medium, these concerns are not completely unfounded. However, every worthwhile endeavour always has its inherent risks, from which greatness is ultimately discovered. I am grateful to have been able to be a small part of this. I feel that I am truly the beneficiary.
If any reader of this blog has specific questions that they would like to discuss in a more private environment, include your email in a comment and request that it not be published and I will respond personally.
You are amazing in both your personal and professional life. What it must feel like to help people to far away, but yet so close.
All great tools are used for good and evil. Keep up the good work Kevin. Thanks for sharing your journey and experience. I am curious how amyloidosis is connected to multiple myeloma (my father had multiple myeloma), just curious. Some day maybe i'll have a chance to discuss it with you.
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