By Laura Chandler, as told to Carolyn Crist
My MG experience comes from a blended perspective. I’m not only a patient, but I’m also a patient advocate and work in research as a layperson.
Caregiving for my mother, who passed away recently from a rare disease, crystalized my motivation to do advocacy work for MG and the broader rare disease community. So many of us have overlapping experiences and needs.
Becoming a Patient Advocate
Though I was diagnosed in 2019, it still feels pretty new to me. I live in a rural area in Kentucky, and as a result, I don’t have a specialist nearby. It took six months, five doctors, and out-of-state travel to get my definitive diagnosis. I consider myself lucky though, given that some people go through a diagnostic odyssey that lasts an average of six years.
That fact alone sparked my interest in advocacy. I realized I had the privileged experience of getting a definitive diagnosis quickly and having family and community support to travel for health care. That isn’t available to everyone.
I had the visible, textbook symptoms of MG, and people could see when I didn’t feel well. Many people experience invisible symptoms or may not look sick. You can’t see that someone is struggling with muscle weakness or that their diaphragm doesn’t allow them to get adequate breath.
As I started to encounter barriers to getting health care, I immediately tried to figure out how to overcome them and help make changes that would make things easier for myself and others with MG. Similarly, I see many people in the MG community feel compelled to give back in some way so others don’t have to deal with the same access issues.
By spring 2020, I was on Capitol Hill, speaking with my state representatives and senators about our needs. I wanted them to know that the current treatment options require a huge risk-benefit analysis that can be life-altering – and I wanted to be part of finding ways to change that.
Finding Trustworthy Information and Support
After my diagnosis, I started looking for resources and trusted sources of information about patient experiences, treatments, and future developments. There are tons of different materials and organizations, but I gravitated toward the Myasthenia Gravis Foundation of America because the materials were trustworthy and unbiased. I jumped into different webinars, programs, community health fairs, and events associated with MG and the broader rare disease community.
With MG and other rare diseases, you have to be careful about the sources of information you consume. Especially when there are new treatments in the research pipeline, initial information may come from the developers of those treatments, and you have to understand that some perspectives are those of someone trying to sell you something. Instead, it’s important to look for scientific and unbiased sources of information.
Although it’s wonderful to connect with communities in online forums, too, they can also be a source of bad information. People may share misinformation, not on purpose but because they’re looking for help in the Wild West of social media. Just because someone says a certain strategy helps them doesn’t mean it’s going to help my symptoms or represent any type of cure.
Volunteering and getting involved with MGFA underscored for me the critical need for credible, factual information. As I continued to learn and grow, I began to understand the importance of research and grant funding. The National Institutes of Health and FDA are doing incredible work to move the needle on research initiatives, but funding hasn’t increased while costs are going up, including personnel costs and lab costs such as test tubes, vials, and other materials used for research. MGFA is trying to help researchers get preliminary data, conduct pilot studies, and hopefully apply for larger grants or research initiatives to propel them further.
Following New Developments and Getting Involved
One of the things my mom always told me was, “If you’re the smartest person in the room, you’re in the wrong room.” As a layperson attending conferences on MG and rare diseases, I’m always in the right room, as I’m surrounded by some of the most brilliant minds in research. I’ve learned several big lessons that might encourage others who want to learn more about MG research.
First, you’re not always going to know or understand everything that’s being said. Sometimes the acronyms and scientific language are over my head, too fast to process, or outside my realm of understanding. However, there is no translation needed to understand the devotion of the researchers who are driven to improve life for people with MG. Seeing the synergy and movement around new developments gets me excited about the latest research.
Next, researchers and clinicians don’t always know everything, but they are diligently confronting the gaps in what we know. Many people in this community have been hesitant – or even averse – to talking about a “cure” for MG, but it seems researchers are ready to start having that conversation. At the upcoming 15th International Conference on Myasthenia Gravis and Related Disorders, there will be a discussion about the possibility of a cure and what the future of MG looks like. I believe this shows how quickly developments are moving in this space, with several new therapies being approved since 2017 after decades with no MG-specific therapies. It’s the snowball effect, where we’re gaining speed and traction and truly seeing a renaissance in neuromuscular research.
Most importantly, patients need to jump on the train while it’s moving. The spotlight is on neuromuscular research right now because things are happening. However, the focus won’t stay on this rare disease forever. This is a good time to get involved as a patient advocate, whether through research or other means. As they say in advocacy, “Nothing about us without us.” In every aspect of treatment and therapeutic development, the patient perspective, experience, and needs should be at the forefront.
I implore MG patients to be part of the future of research – now. I understand if you don’t want to or can’t participate in a clinical trial, but I highly recommend finding other ways to engage in research. The first step should be at least joining a patient registry for research. MGFA’s patient-reported database, for instance, has been active since 2013 and offers one of the largest datasets that takes the patient voice into consideration. This is vital for ensuring the patient perspective is represented as we work to answer future research questions.
Finally, feel empowered. Not everyone has the ability to get involved in a major way, but start where you are, use what you have, and do what you can. Empower yourself to know what’s going on and being developed in MG research and treatment. Getting involved is important for so many MG patients, and it’s what drives my hope for myself and my future.
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Photo Credit: Tetra Images/Getty Images
SOURCE:
Laura Chandler, national director of academic affairs and research initiatives, Myasthenia Gravis Foundation of America.
