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Patient Insights: I have to advocate for myself

With a rare disease, it is difficult to expect the healthcare community to be fully knowledgeable. Thus being a self-advocate is critically important. Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Dan.

Helping Patients Find Their Voice

In the words of Dr. Rodney Falk, “Amyloidosis is a paradigm for thinking outside the box.” The disease can be challenging to diagnose, even for the most seasoned physicians. In the case of the patient, the unknown, with all of its potential disease symptomatic variables, can make for a daunting situation. Developing one’s “patient voice” can seem unduly intimidating. Advocating one’s position may come natural to some, but terrifying for others, especially when the physician is viewed as the expert. Additionally, many patients may find it difficult to translate their feelings without having a medical vocabulary.

With regard to effective collaboration between physician and amyloidosis patient, there have been many success stories, but unfortunately numerous failures as well. One hereditary amyloidosis patient shares a story where after several years of increasing symptoms, and failed attempts with multiple physicians, he finally saw a cardiologist who went out of his way to put the patient at ease, telling him that he wanted to make it perfectly clear that the patient was of utmost importance and that he was being listened to. This was effective in allowing that patient to “find their voice,” with a resulting diagnosis being made shortly thereafter.

Another amyloidosis patient, a woman with AL amyloidosis, had to endure a nine-year journey of increasing symptoms prior to her diagnosis. “I was seen by nine doctors of various specialties, including hand surgeons who performed multiple carpal tunnel release surgeries, an electrophysiologist who diagnosed an unexplained autonomic dysfunction after a tilt table test, gastroenterologists who addressed three separate gastro-intestinal bleeds, multiple cardiological specialists who addressed atrial fibrillation, enlarged heart and diastolic dysfunction, and then finally a cardiologist who listened to my long list of symptoms and reviewed my relevant test results and medical history. This cardiologist maintained a sense of curiosity, resulting in him ordering a “free light chain” assay, leading to additional tests that ultimately confirmed a diagnosis of AL amyloidosis.” The patient states that “the cardiologist listened to me, was not dismissive of my complaints, and did not give up on me. It was this man’s persistence and curiosity that led to my diagnosis and saved my life.”

These two patient stories illustrate how imperative it is that the physician fosters an open and supportive avenue of communication such that the patient can “find their voice” and effectively function as their own advocate. Per Dr. Falk, “…you have to listen to the patient, because the patient is telling you an awful lot.” He goes on to say “…when that person comes through the door, they’re the most important person in the room and not the physician.”

There are several straightforward but effective catalysts that the physician can use to help the patient find their voice:

  • Empower your patients. Some patients are intimidated by physicians and feel the power is entirely in their hands, so in order to foster better communication, give your patients a greater sense of participation in their care. This means making the patient feel important. Again, per the words of Dr. Falk, “…when that person comes through the door, they’re the most important person in the room and not the physician.”
  • Listen without interrupting. According to the Journal of General Internal Medicine, patients on average have 11 seconds to explain the reasons for their visit before a physician interrupts. However, if the doctor lets them speak longer, they will tell you what brought them into the doctor’s office.
  • Seek and provide information. Knowledge is power, both for the patient and the physician. Patients need to be able to effectively explain their situation to the physician and also have their situation explained back to them in terms that they can understand. This may include asking clarifying questions and allowing the patients to write down any questions that they may have, or any information that they may feel is important.

In summary, with a disease such as amyloidosis, it is imperative that a diagnosis be made in a timely manner, making “the patient voice” all the more critical.



The Power of the Patient/Physician Collaboration, https://mm713.org/the-power-of-the-patient-physician-collaboration/, Dec. 7, 2021`

6 Ways to Improve Patient Communication, https://www.jotform.com/blog/patient-communication/, March 23, 2023

Seven Ways to Advocate for Your Health

If you have been diagnosed with a rare disease I’m sure that at some point you have met a nurse or doctor who has never heard of your condition. Some flat out say “what’s that?!” Some side eye you while they quickly google it on their phone. One nurse said to me once “Wow! If this was a teaching hospital everyone would want to come to see you.” Gee thanks. Way to make a girl feel special. Now I don’t blame them for this. Doctors and nurses have a very stressful and essential job and we would be lost without them. But they are human. And no one can be an expert in every condition or disease that exists. It’s impossible.

Which is why it’s a good idea to be an active member of your health care team and advocate for yourself to ensure your needs are being met.

Seven Ways to be an Active Member of Your Health Care Team

  1. Don’t take no for an answer!  This is particularly important when you are searching for an elusive diagnosis. Don’t let them push you away or try to tell you that your symptoms are all in your head because they can’t figure you out. Trust your instincts. If you know something is wrong, go back again and again until they take you seriously. Get a second opinion. Don’t give up!
  2. Seek out experts.  Once you have that diagnosis, do some research. Find the best specialists near you and ask to be referred to them. Ask your doctors, hit the internet, join a support group and reach out to others who have your disease. Ask around and find the experts! They are the ones you should put your trust in.
  3. Educate yourself.  Don’t just go crazy with Google, as information in the public domain may be outdated. Ask your doctor for reputable sources of information. Join a support group, find others like you and learn from them. You can gain a wealth of knowledge from people who are living with your disease. Educating yourself is an important part of your healthcare.
  4. Ask questions!  Why do I need this medication? What are the side effects? What do we do if I get those side effects? What happens if I don’t take this medication? Go through the risks and benefits of medications and treatments with your doctors. Don’t be afraid to ask questions. Your doctors want you to make informed decisions.
  5. Ask your expert before taking any medications or supplements.  If you end up in the emergency room or a walk-in clinic, if time permits, run any suggestions for medications by your expert. Doctors who don’t have extensive knowledge of your rare disease may not know all of the potential complications and interactions. And don’t take any type of supplement or over the counter medication without first getting approval from your specialists. I love natural medicine, but it needs to be treated with the same respect and caution as any other medication. Natural does not equal safe.
  6. Organize your info and carry it with you.  It can advocate for you if you’re not able to. I have a little folder which contains my official diagnosis report, a list of treatments I’ve had, a list of current medications, and the names and numbers of all my specialists. It comes along if I have to head to the emergency room.
  7. Speak up if you are suffering.  I think sometimes we push through our suffering assuming that it’s just part of the process. But it may be as simple as adjusting the dosage or adding in another medication. So, if you are having a new or worsening symptom or a side effect from a medication, let your health care team know. There may be something they can do to help.

You are the most important member of your health care team. So, speak up when something is wrong, ask questions, learn as much as you can, and find the specialists that you can put your trust in. Self-advocacy can be a powerful force in your health care journey.


Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  When not writing, she is mostly a stay at home mom, florist, crafter, lover of books and food.

ASB: Our First Six Months

It’s been a quick six months since we launched the Amyloidosis Speakers Bureau, and we wanted to provide an update about our progress and all we have accomplished so far.


Our mission is to educate future doctors about the disease, through both a patient speaker and an educational packet. Each year we will reach out to medical schools across the U.S., first asking to present to their students within their curriculum, but if that is not possible, we are finding success through their student interest groups.


We started our initiative on February 1, 2019 and spent the first two months getting our operational and digital platform in place (www.mm713.org/speakers-bureau/ ). In April 2019, we began emailing medical schools, developing our educational packet, and recruiting amyloidosis patient speakers.

As of August 1, 2019, here are the numbers for our 2019-2020 school year.

  • Reached out to 194 medical schools and student interest groups.
    • 46% have responded to our inquiries.  Of these,
      • 33% responded with interest,
      • 42% have passed us on to a colleague for consideration and we are waiting,
      • 10% have said their curriculum is full this year and not open to new additions, and
      • 15% have indicated they are not interested.
    • 10 presentations have been scheduled, 4 are in the queue to be scheduled, and more are expected.
      • According to the schools, these 10 presentations have the potential to educate 1,350 students. As future presentations are added to the calendar, this number will obviously increase.


  • Recruited 34 patient speaker volunteers across the U.S., with a wide array of types of amyloidosis. 


  • Developed an educational packet comprised of seven components. The emphasis of the content is towards diagnosis rather than treatment.
    • An introduction to amyloidosis, laying a broad foundation of the disease, developed by experts in the industry
    • A presentation on diagnosing amyloidosis 
    • A presentation on amyloidosis and the kidney
    • A presentation on cardiac amyloidosis
    • A presentation on the diagnosis of amyloid cardiomyopathy
    • A presentation on pathology and laboratory testing for amyloid
    • A selection of patient survivor stories, highlighting their journey with the disease


  • Received the support of 30 advisors, who include medical experts, influencers, and patients in the world of amyloidosis. A number of our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as educational development, medical school introductions, and patient speaker assessment/development. 


Much work remains to get a connection with the remaining 54% of our universe, and each week, we advance our outreach efforts. We anticipate our push for the current school year will continue throughout the fall, and then in the spring of 2020, we will be starting our push for the 2020-2021 school year, reaching out to all schools and student interest groups.


We are proud of what we have accomplished in our first six months, and are energized about our potential. We will be collecting feedback and data on our efforts, adapting our approach where appropriate, and expect increasing success over time.


We wanted to extend a special thank you to our speakers, for without them, there would be no ASB. They are an integral part of making the ASB a success by helping to change the trajectory of diagnosing this disease and increasing patient survivorship. We are proud to have them on the team. If you are a patient in the U.S. and interested in joining our initiative, please email us at asb.mm713@gmail.com. We’d love to talk!
Be sure to follow us and track our progress, whether it be by signing up for our Mackenzie’s Mission mailing list, or following us on Facebook.
With warm regards and much appreciation. 
Mackenzie, Charolotte, and Deb
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