Be Your Own Advocate

A Real Life Example

This past Rare Disease Day, February 28th, 2018, I had the opportunity to attend a lecture at Jefferson College in Philadelphia. The speaker was a physician, a researcher, but even more unique he was a patient with a rare disease. His name was Dr. David Fajgenbaum, has idiopathic multicentric Castleman disease. You can read more about his story here. It was a fascinating presentation as the audience, minus myself and a few others were all medical school students. They ranged from first-year students to doctors getting ready to graduate. 

As a rare disease patient, it was exciting to hear a physician talk about what you should do if you hear hoofbeats. I thought it was awesome that they talk about that stuff. I thought maybe it was just a great tagline they told patients with a rare disease. I can confirm I have heard medical students now being taught to look about zebras if you hear hoofbeats!  

Primary Immunodeficiency

Dr. Faigenbaum made a couple of points that brought this idea home to me and made me think about the role of the patient. His point was that “in medical school, you are taught what is known, you are taught about the horses.” It makes sense as you can’t teach what is not known, which is what makes rare diseases, the zebras, so hard. He furthered the point by showing a statistic that only 5% of rare diseases have an FDA approved drug.

The statistics show that the majority of the physicians in the room will never see a Primary Immunodeficiency(PI) patient. You as a patient will have more working knowledge of your disease than your primary care physician, or any other physician outside your Immunologist. So, what do you do? It is frustrating to constantly have your PI lecture ready to go when asked; everything lined up in case of emergency. Maybe it is disheartening to think about it, but if you take a minute and read Dr. Faigenbaum’s story, you see the answer. Be your own advocate.

Let’s break this down a little more and examine what the heck does that mean. According to the Merriam-Webster dictionary: advocate – verb: to support or argue for (a cause, policy, etc.): to plead in favor of. I am not saying get trained as a physician, but you must know what you are asking for when you sit down with your physician.

When I am dealing with a physician that is not familiar with PI, I approach it like a business relationship. Why am I here? What am I hoping to get out of this appointment? Lisa covered a lot of preparing for an appointment in her series on the doctor relationship – Pt. 1 Honesty, Pt. 2 Putting together the Right Questions, Pt. 3 Put it all Together. I often scroll through different PI related groups online, and I find that people are frustrated with doctors who don’t understand. The feeling of despair when you may know more than they do, and hey I get it. Sometimes I just want someone else to take the burden of all of this. I turn to meditation in those moments. It has done WONDERS for me! More on that to come later, but if you are looking for a place to start, I love the Headspace app.

This presentation truly inspired me. I felt so much hope seeing a room of medical students learning about a rare disease and learning that if you find a Zebra that it is ok, in fact, it is a great thing! I find inspiration in Dr. Faigenbaum’s story, and how he is the real embodiment of being your own advocate. He took his advocacy efforts into advocating for many other patients as well. As we head into PI awareness month this April, I challenge you to set a goal this month to advocate for yourself in just one way. It can be small or large but set a goal and take action on it. I am challenging myself as well for April. Lookout for updates on my advocacy goals on our social media pages. 

Not sure where to start with your advocacy goals? Shoot me an email, and I am happy to talk it out with you. I look forward to hearing from you.