Articles, Blog

We are Fighting Disease

November 15, 2019


Precision medicine is getting the data to provide treatments to individuals as opposed to collections of people. Whether it’s a targeted therapy, whether it’s medication, we have to base that off of all of those individuals that make up this country who are going to be receiving health care based on the results of the precision medicine initiative. Many people living with rare diseases don’t know they have them yet. The benefits of the rare disease community being involved are phenomenal. Not just to have those communities or disease groups represented, but also to gain new insights that you might not have been able to have five, ten years ago. Now we can explore cross-diseases where we hadn’t thought about them being connected before. You think about paralysis, you think about someone can’t walk, someone can’t move their hands or their arms. But there are a host of secondary complications that come with that: increased blood pressure, susceptibility to pressure wounds and pressure sores, autonomic dysreflexia which can actually kill you. We don’t focus enough on disability in our society, unfortunately. Parkinson’s patients and their families don’t appreciate fully how much they are needed for research. The real Holy Grail is something that might stop or reverse progression, and ultimately prevent anyone in getting Parkinson’s disease. It’s really important that people with Autism be counted, that we look at their health needs just as we would look at my health needs, your health needs. There’s enormous potential there for people living with schizophrenia, bipolar disorder and major depression. The diagnostics are not nearly as precise as they are for other disorders. People are going to get to these diseases in different trajectories, and that’s what we’re going to learn now. Not just whether you have a disease, and how do we tell, but how did you get there? Because I think that’s really the hope of getting us out of these disorders. Everyone is going to be a patient. Everyone. That’s your reason to do it. And your kids are going to be patients, and your grandkids are going to be patients, and your wife’s going to be a patient. So you have a real vested interest in supporting this initiative. Diversity strengthens the science. It’s very important to reach all types of participants for study to eradicate disease and illness. Precision medicine will be a way to better treat each person as an individual. And know that one size doesn’t fit all, and treatment A for this person might not work for the next person with the same exact disease. It is abundant of knowledge, abundant of skills, and we all should be taking something away from this. Nothing has been done like this in the past, looking holistically across health care. This is something that you can be part of and I, for one, would be raising my hand to participate.

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