In the last few months as I slowly get to know professors and administrators in my school, I have noticed a trend. I wouldn’t say it is an academic thing, or law school related, rather it is just ignorance. When I express my motivation (or insanity) behind deciding to go to law school such a short time after being diagnosed with my rare disease, I’m met with a strange reaction. Everyone says the same thing except in different ways. It boils down to, be passionate but focus on your studies. Continue reading
With two weeks of law school completed, I am physically drained. It isn’t due to the work, I have worked longer and harder hours doing physical and mental labor that was nothing short of torture at times. The difference now is my health. I cannot sustain myself for extended periods of time because my body has to try and fight off germs from the hundreds of people I encounter at close proximity every day. I almost exploded this week because people can’t respect personal space and therefore were making me worry that I might become sick. Up with a scratchy throat at 8am on a Saturday, I’m afraid that my concerns were justified. Continue reading
September is ITP awareness month, so it is only fitting to start off with a list of the things that I have come to discover about life with low platelets. It has been a challenging, difficult and frustrating journey. However, I would be lying if I said I wasn’t a better person because of it. Continue reading
In three years I’m coming out ready to take over the drug development field. We need to revolutionize the way we bring new drugs/devices to the market. Things have to change, too many of us are dying while red tape destroys the process.
Let’s do this.
Becoming a patient is automatic, the minute you are born you become one. As you go through life you become a patient to more healthcare providers. The title is what you make it, decades ago patients just listened to their doctors. Now, we have to listen and discuss any issues related to our health. It many ways it is easier said than done. So what do we do to become an empowered patient (or encourage someone to be)?
I can’t believe the amount of pain I have been in recently. It travels around my body from my knees to my shoulders and back to my ankles. I knew something was wrong so I went to see my doctors and explained my symptoms. The pain on a scale from 1-10 is about 6.5 to 7 so I needed to be proactive.
Imagine having blood drawn via a finger prick, downloading an app to your phone and the results in your hand within 24-48 hours. On top of that, you knew exactly what you would pay for the blood tests you wanted and you didn’t need to get orders from your doctor. This isn’t an idea, it is reality for those lucky enough to live in Arizona thanks to a company called Theranos. Continue reading
What do you say when you meet a hero? Do you thank them? Do you ponder how they achieved greatness? In the case of Noah Coughlan, how do you express your gratitude for sacrificing so much to advocate for rare diseases? I still don’t have the answers to any of those questions. Continue reading
It seems we spend more time in the waiting room than actually interacting with our doctors. That’s why as patients we must consolidate as much information as possible and leave out unnecessary details. Given the prevalence of health data trackers like Fitbit and Jawbone, it is critical that we focus on important symptoms and side effects. Continue reading
I’ve been rare for about 14 months now, enough time to start noticing things within the space that aren’t so fabulous. I’m pretty disgusted by the actions of a few people and organizations that are treating rare disease advocacy as some sort of popularity contest.
News flash: If you’re popular with fellow rare disease advocates, you’re doing it wrong!