I was not expecting such a powerful talk to take place over the short span of one hour, but it did. Not only was this educational regarding amyloidosis, but it was also incredibly inspirational and moving. Rayna’s account of her journey through her diagnosis was emotional, raw, and empowering. While we learned about amyloidosis in our program so far, it was only in the context of restrictive cardiomyopathy. Through this talk, learned it was so much more, and that it is something that I should be aware of as a future provider.

In medicine we always talk about how we learn in two ways – first, through the textbooks and lectures, and then second, through our patients in the hospital. It’s this second kind of learning that creates the lasting impact, and where many doctors first start to feel they are confident understanding these diseases. This presentation allows learners and medical students to begin to develop this deeper kind of understanding for amyloidosis through hearing a patient’s story, and this awareness is key in catching amyloidosis patients earlier, and improving or even saving their lives. I found this talk to be a very valuable educational experience.

Our experience with the Amyloidosis Speakers Bureau was wonderful! Liz is an amazing speaker, and shared her entire journey with amyloidosis with us. She took us through the mind of a patient, including her fears, her goals, her personal life, support system, and relationship with her physicians. I can speak for our entire organization by saying that having Liz and the ASB is truly an amazing addition to our medical school education. I would recommend speakers such as these to every single medical school. I cannot thank them enough!

This was one of the most valuable patient presentations I have experienced during my first year of medical school. This not only deepened my understanding of amyloidosis but also gave me an important understanding of the impact of the disease on the patient.

As a first year medical student, we are conditioned to remember “congo red stain” and “apple green birefringence” when thinking of amyloidosis. This presentation was a great reminder that amyloidosis is the patients who experience it. It’s the progressive loss of function, it’s the non-specific symptoms that take time and multiple doctor’s visits to figure out. This was a great experience and will help me keep this diagnosis in mind when I encounter patients in the future.

Very informational and touching speech by the amyloidosis speaker. I was able to learn a lot from her testimony. From this presentation, I reached out to orthopedic hand surgeons I used to work for and spread the word about amyloidosis. Their initial response was hesitant as they thought it was just related to the heart and GI tract. I was able to provide updated information about amyloidosis to them all because of this presentation!

It’s one thing to know about the clinical presentation of a disease but to know what the patient experiences while having the disease can be a totally different thing, and can only be truly expressed by the patients themselves. These patient experiences can be harder to understand for us medical students but supportive group talks like this can really help us in understanding how a disease really affects a person from its onset to the present moment.

I believe that this experience can assist other schools and other health professional students to understand the patient’s perspective on a disease or diagnosis as well as really put into perspective the knowledge or limited knowledge that we all have as future healthcare professionals. It is incredibly important to humanize the medicine and through panels like these we are able to humanize what we do and really see the impacts, both positive and negative, that a patient may experience which will make us better caregivers.   

This was an incredible experience that gave me the opportunity to learn about amyloidosis from the patient’s perspective. This will no longer just be another disease I have to memorize; it’s become more personable and I believe I am more likely to recognize it in clinical practice going forward.

As a medical student, I have spoken to several patients and have participated in many patient presentations, but they always seem to miss the mark. We need to hear about the emotional aspects and challenges at home that accompany the journey to diagnosis and treatment. This presentation covered all of that with the clinical information included.