I marvel that even though almost every doctor I meet looks at me like a ghost from one of their med school books - having Granulomatosis with Polyangiitis (GPA) is something many of them read about, but since practicing have rarely, if ever, seen in real life - yet, the modern medical world gives them access to the information that they need in order to treat me. The miracle of modern medicine goes beyond borders with information now freely shared all over the internet. The biggest miracle is not the machines, or the drugs, but rather the ability of any doctor anywhere in the world to access information about a similar case even without ever having seen one in real life.
When my rheumatologist came into the ICU to talk to me, my parents and my husband about my initial diagnosis, she came armed with her iPad and pulled up files from the Vasculitis foundation in the UK. She answered questions, that would make many doctors cringe, with ease as she pulled up the information right there in front of us from the internet. She is a remarkable lady but she is currently on leave and there isn't another rheumatologist within 100kms from us. I recently was examined by a doctor of another speciality who had to make the use of a medical camera as a diagnostic tool. When the new doctor found something she was concerned about, she took my phone and recorded the video from her computer screen for me to keep in case I needed to urgently travel to see another rheumatologist before mine came back from leave. She then sent the video in a message from her phone to my rheumatologist who was on leave. I sat there dumbfounded. The fact that they can see inside my body with advanced medical cameras is amazing enough. The fact that the piece of apparatus that really saved the day on this occasion was a simple iPhone camera is quite another. The big expensive piece of equipment in the hospital was necessary, but the fact that the doctor was young and smart enough to understand the power of the phones in my pocket and hers in getting the information to where it needed to be was just mind blowing.
Since being diagnosed in 2015 I have also discovered that the power of social media in assisting patients and their families is phenomenal. When you live in a corner of the world where your doctor has never even met someone who has the same disease as you, it is hard to imagine that you would ever be able to share your struggles with anyone in real life. To be able to connect with hundreds of patients at the same time who have gone through or are going through the same struggles has increased the value of social media for me one hundred fold. Shared struggles seem much lighter, and being able to talk to people who are actually going through what you are going through, as opposed to only medical professionals who have only ever read about what you are going through is something that holds an enormous amount of value for patients with rare diseases like mine. The doctor who took the video with my iPhone explained my options to me, but was surprised that I knew much more about the procedures that she was talking about than the average patient due to the information that I have been able to gather from patients with similar conditions. It may not be everyones cup of tea, but I have even watched a similar procedure being performed on Youtube to better inform myself in case I have to have the procedure that they are recommending. The information is out there, and it is now up to patients and doctors to work together using wisdom and mutual respect - patients after all are not qualified doctors and should respect the imperative role that their doctors play in taking care of them, but the doctors must also accept that in many cases the patient is no longer uninformed, and now plays a much more active role in their own care than they ever did before.
The internet is shifting the power of the medical world. With more young doctors open to using technology and more informed patients, who knows what it will look like in the years to come. The shift is understandably difficult for many doctors. It must be incredibly frustrating to have patients coming in declaring that they have some disease that they have found on Google, without any genuine medical basis for their self-diagnosis, disregarding years of medical school and medical experience and insisting to prefer Dr. Google. But in the cases of patients that genuinely do have diseases that doctors have rarely seen, the shift is welcome, and the faster that it happens the better. The medical world is no longer a place that is accessible only to those who study to be doctors. Our world is changing and as much excitement as the enormous medical discoveries of the future are going to bring, perhaps the wonder of the shift is that sometimes the solution is as simple as the iPhone in your pocket, or the iPad on your doctors desk, and the source of information that you may really need is a group of patients from all walks of life that have the same disease and a Facebook page in common.
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