Mahalakshmi (Maha) Parakala is an active member of the Patient Advisory Council and currently serves a co-leader of their recruitment taskforce. She is a LOOP contributor, has presented during ICN Community Conferences, has co-developed IBD resources, and recently co-hosted an episode of the new imPACt podcast. At our Spring Live Online Community Conference, Maha shared her story about discovering patient advocacy and the role it has played in her life during our Engagement Plenary Better Together: Growing our CIRCLE Community to Take Care to the Next Level.

Please enjoy Maha's presentation, which we have shared both as a video and in transcript form, below:

When Chris and Mary asked me to talk about the importance of patient advocacy, I was elated, but as I began to write some thoughts on this topic, I struggled to figure out how to share what I was feeling. Patient advocacy is a very special topic, as it has changed my life in a lot of ways, so in order to really show you what patient advocacy means to me, I need to start from the beginning.

Let’s start here, with a little background info: I was diagnosed with Crohn’s in 2016, immediately put on Remicade, used steroids, and also EEN via feeding tube.

Diagnosis was a really rough patch of time. Apart from some generic pamphlets sent to me in the mail, I had no real knowledge about what IBD was and I couldn’t really process what was going on. On top of that, being South Asian, with the stigma around chronic illness, I felt isolated and struggled to cope with this major life change. I didn’t know where to turn, and I wasn’t offered any resources by my doctors so I had to dig for information myself.

And this is how I started to learn about patient advocacy. Doing the research on my own, and becoming more involved with the IBD community, I started to realize how difficult it was for most patients to find resources, especially for pediatric patients.

I continued to learn and involve myself in the Crohn’s and Colitis community, but the real turning point of my journey into patient advocacy happened in the summer of 2017 when I began EEN. With the addition of the feeding tube, all of a sudden, this invisible disease became very visible. Even small experiences like going to a friend’s house, and big things like going to school were colored by this little yellow friend I had sticking out of my nose. I had to constantly explain, defend, and advocate for myself in all settings in a way I hadn’t really done before. And while it wasn’t always easy, this experience made me realize something: the power and importance of using your voice, and that YOU are your biggest advocate.

This period of time propelled me to embrace my Crohn’s and search for opportunities to continue this advocacy work, not only for myself but others who may have struggled like I did. This is how I found the PAC. Joining the PAC and the larger ICN community has been the most significant and meaningful patient advocacy experience I have ever had.

I rarely see an organization support their patients by centering their perspectives and uplifting their voices like ICN does. When I was able to lead a panel on minority patients, I felt so empowered, against the stigma I've felt from my own community for years. This is what makes ICN unique. This is what sets it apart from so many other organizations. And I hope more health systems follow your lead.

Within ICN, the Patient Advisory Council has been a life-changing experience. From friends to mentors, having this group of people who just understand me, without needing explanation, is incredibly comforting. And working with this group to create patient care resources written by actual pediatric IBD patients is a phenomenal example of how patients can use their perspectives to empower and educate other patients, caregivers, and providers.

And these resources are awesome! I myself have benefitted from many of them. The College & IBD Toolkit helped me make a more informed decision on where I went to college. The Disordered Eating Toolkit validated everything I felt towards my relationship with food. And there are so many other resources that if I could go back in time and give them to myself, I’m confident that my care and attitude towards IBD would have been much better. Because hearing from another patient about what they’ve gone through and how they’ve overcome it, can give you a sense of confidence and hope. And that...that is what can really makes a difference in your care, and in your world.

So why is patient advocacy so important? Having a chronic illness, there are so many things out of our control. And this can make you feel less than capable of handling your own health. By providing your patients with these resources and access to a larger community of people, you are giving back the power to your patients. So I want to propose a call to action. To any providers, please, please share the PAC’s resources with your patients. Whether or not they become involved with PAC and ICN in general, these resources are so important. It can take reading just one experience, one quote for someone to feel less alone, to feel more hopeful. To recognize and validate their own experiences, and ultimately improve their care beyond the checklist of symptoms and lab results that is often the traditional focus of patient care.

I wanted to end this presentation, by showing you exactly what patient advocacy has given me. It's the reason I was able to graduate high school on time with honors, even with all of my absences. It's the reason I was able to travel for the first time in years, without fear. It's the reason I was able to join choir and perform in the biggest choir show of the year. And It's also the reason I have a drive and ambition to pursue a career in healthcare. When I think back to that lonely time when I was first diagnosed, I'm proud of that girl. She fought every step of the way, and continues to fight, and patient advocacy to her, to me, is ultimately, a gift. The best gift.

Thank you.

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