A Patient’s Perspective About This Year’s Porphyria Symposium
The presentation began and I found my seat. Looking around the meeting room, I knew that every single person was there because of a shared interest in my rare disease. Mind blown.
Thanks to a scholarship from the National Organization for Rare Disorders’ Rare Disease Educational Support Program, I had the opportunity to attend the 2021 Porphyria Symposium as a patient advocate who lives with acute hepatic porphyria (AHP). The symposium, titled “Heme Biosynthesis and the Porphyrias 2021,” was held Oct. 15-17 near Chicago.
Hosted by the Porphyrias Consortium and the American Porphyria Foundation (APF), the symposium offered three days of scientific sessions and a patient meeting on the third day.
I felt fortunate for the chance to attend, and I learned a lot. But I also believe it reflected a disconnect in our society between industry and patients. The weekend strengthened my longing for a day when the lived experience of members of the patient community is better represented and valued in research.
No single medical specialty claims porphyria, which is a unique aspect of this disease and this conference. Professionals in hematology, gastroenterology, hepatology, neurology, and pain management gathered to learn what to do when a patient like me shows up scared and traumatized in their practice.
In my seat, my mind snapped back in time to my own diagnostic struggle and the symptoms I endured. I saw my own sickness in the case studies and the data that were presented. What was missing from those slides was the lived experience of porphyria patients outside a care facility.
Doctors, even experts, don’t meet a ton of us in their practice, and they don’t fully understand how we manage our illness day to day. A patient’s real-world landscape can’t be presented with bar charts and statistics. This is the biggest disconnect in the medical community, and that’s where the patient interviews came in.
Throughout the scientific sessions, there were presentations about each porphyria subtype, which included a patient interview. These brief and controlled conversations were the conference’s most valuable insight into life with porphyria, and the perspectives are necessary to move research and treatment protocol forward.
Pain is something porphyria patients have in common. The need for pain management is an enormous source of stigma and a topic I wish had been more deliberately discussed. Perhaps the next evolution of this symposium will include studies on porphyria-specific pain.
On Sunday of that weekend, people living with porphyria and their caregivers convened in person and virtually for Patient Day. I’ve been to a patient meeting hosted by the APF before, and this one wasn’t typical. Instead of a single doctor host and more time for conversations among attendees, multiple medical experts presented on topics ranging from porphyria subtype education to treatment with medical cannabis. The time to interact with doctors was limited to a panel at the end of the day.
Hands down the best aspect of the symposium was the opportunity to meet and learn from other patients. It’s not common that I feel truly understood by someone. The deep bond I felt with other patients, specifically others with AHP, was because we’ve gone through comparable traumas and benefit from similar life hacks.
What I wish I knew
Before choosing to attend an industry conference, I recommend being clear about a few things first, namely, why you want to go and what you hope to gain. Unfortunately, many industry conferences aren’t designed with patient accessibility in mind. There may be cheaper and less taxing methods to help you find out what you’re looking for.
I wish I had considered the difference in attending the symposium as Claire, the working professional, versus Claire, the patient activist. Disease activism is not for the faint of heart, as three-time breast cancer survivor turned global patient advocate Liza Bernstein recently wrote.
For any patient attending a medical conference, the costs extend beyond the financial realm. Symposium presentations affected me on a deeply personal level, and I don’t get to turn porphyria off when I zip up my bag for the day. Plus, I generally don’t travel well.
Meetings are important for education, sharing, and building connections among industry professionals. But they are critical for patients. I will cherish the fellow porphyria patients I met that weekend, but I look forward to the day when our lived experience is recognized for its expertise. I hope future symposiums will see the value of real-world perspectives in research design and healthcare innovation.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.
Thank you Claire. I love your column, you share such a valuable perspective. I wholeheartedly agree the patient experience is of utmost importance and too often missing..
Linda- Yes! I learn so much from researchers and providers, but what I learn from patients is so helpful in my day-to-day life. I'm grateful for what I learn from you too. Thanks for reading, as always!
I agree with Claire Richmond's observations. It was my first conference. I am thrilled that physicians and researchers presented on what they knew and that I could attend for free. THANK YOU!!! There are so few that study this condition. I hope that there can be more funded research and I am very grateful for this opportunity.
However, there was a disconnect between what is experienced with Porphyria and what the field knows about it. So, there were a lot of direct chat messages on what worked in managing these conditions, since there are so few that have treated or studied them. I think I can safely say that there are a lot of ideas about the condition that need correction or clarification or both. There are neurological elements that are triggered in various ways, depending on the particular type.. For example, My family has hereditary Porphyria and it runs through the female line, though not all female descendants have it. Most often, though, the neurological symptoms of Porphyria, combined with being female, were and are still treated as a type of hysteria or "anxiety attack".
Could there, please, be a virtual session in which Porphriacs discuss their conditions and how they cope? It would certainly open up new avenues of research and treatment.
Thank you for the opportunity to provide my feedback!!!
Rosemary- Now I wished I had hopped on the virtual meeting so I could see the Patient Day chat! Yes, we can learn so much from our physicians, but also from each other. In terms of coping, you gave me a great idea for a future column! Thank you for reading and thank you so much for your comments.