Patient initiated research: New frontier for Ehlers-Danlos syndrome

Social media platforms can be a great way to connect with friends and family, or reconnect with old friends you thought were lost forever. Twitter  offers the chance to get inside the everyday life of celebrities and politicians; to see what their day-to-day is. Myspace… no one uses myspace any more. For the rest of us, though, social media is a place where we can connect with other people who share our every day pains and struggles, and find support in our shared journey.

Chronic medical conditions pose many challenges, and every day a new barrier erects where one was previously torn down. Distance is hard, and one of the biggest aspects to our struggle is connecting with people who understand what we’re going through. Facebook groups solve that problem, for the most part. However, the main reason most of us connect with eachother and search for others who are going through similar things is to find answers. Talking with someone who knows what its like to be chastised for being sick, or labeled a hypochondriac and a malingerer, may answer the question: am I all alone? But it opens up a whole new line of questions: how do we stop this from happening.

This is where patient initiated research on a social-media platform comes in. The amount of questions we have is staggeringly larger than the bank of available answers. That being said, the onus for change rests on our unstable shoulders. These groups cannot remain functioning solely for the purpose of communication, they need to be seen for their true virtue: a massively dense base population from which to conduct research.. We need to push for research to be done, but in order to be taken seriously, we need to present research proposals in a novel way. The answers aren’t going to be found in our lifetime, or even our children’s, for all the questions EDS presents if we leave it to the unsteady stream of research conducted in government funded laboratires and research universities. We need to take advantage of the unique position we are in: gathered in one place with thousands of other people who all share the same disease.

There are government grants to be had and professional medical collaborations to be made; only if we start doing what we desperately need done. Lying down like a baby-in-a-basket waiting for someone to solve our puzzle is only acceptable for a very short window of time. As it stands, we have been lying down for years. We need to stand up, and fight for our rights, and for our health. No one else is going to do it for us. The average doctor may meet one or two patients with EDS during his career, and so publish little if any medical journals on the subject of treating Ehlers-Danlos syndrome. When we are together on-line, though, we are not one or two random patients, we are one or two thousand. If one or two thousand people begin writing research proposals and conducting psychological, social and biological research, people will listen. And maybe, just maybe, we will be able to answer some of the questions that have gone overlooked, for decades.

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One thought on “Patient initiated research: New frontier for Ehlers-Danlos syndrome

  1. Nicole Pugh says:

    Hi my nameis Nicole Pugh..I am 30 years old and I suffer from EDS the hypermobility type.. Please let me know how we can get this more awareness.

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