So, What Does the Struggle for a Cure Look Like to SRNA?
To SRNA, it means striving towards a day where there are no rare neuroimmune disorders, and that those who have been impacted by these disorders have the ability to have their full function returned to them should they wish it. It means paving a way toward the possibility of better outcomes and a more complete recovery. It means the possibility of true remission for those with relapsing disorders.
Although this sense of the cure has not been developed yet, the stories we’ve just gone over highlight amazing aspects of what we’re doing and the lives those in our community are leading.
In “Stronger Together: Connecting the Rare Neuroimmune Disorders,” we sought to depict our reason for joining these somewhat distinct rare neuroimmune disorders under the banner of SRNA. We wrote the following:
“When it comes to rare diseases, there is strength in numbers for conducting research to better understand the causes, treatments, and recovery for each of these disorders.
By researching rare neuroimmune conditions together, we can collect more meaningful data and understand better for the next generation of patients affected by similar disorders and symptoms. There is a web of ways that these disorders are interconnected, and we are always seeking to understand them more deeply through our efforts with the SRNA Registry and other research. We can go further in research if we have more people involved. In a talk from our Rare Neuroimmune Disorders Symposium in 2019, Dr. Greenberg described the importance of including everyone in studies on these disorders. In it, he described ways that silos can result when patients are diagnosed with a specific disorder. A provider may diagnose someone with TM and refrain from digging deeper into any other possibilities. In research, Dr. Greenberg pointed out that including everyone in studies on rare neuroimmune disorders improves the quality of the analysis. For example, in studies on NMOSD, it was essential to include those with a TM diagnosis to help determine if the AQP4 antibody was actually connected to the disease. As Dr. Greenberg said, ‘including patients under a big tent changes our understanding of the disease.’”
To seek out the cure, we have chosen to band together. This primarily leads to discoveries that wouldn’t otherwise be uncovered. A secondary benefit of choosing this unity has been our ability to support and care for those who may otherwise fall through the cracks. As Amanda Zaleski puts it in “Reflecting on Our Family’s First Rare Disease Day,” “Our recipe for hope anchors on social connectedness and support from family and dear friends, consistent access to trusted healthcare providers, and a growing list of social communities and non-profit advocacy organizations.”
The struggle for the cure thus does involve a lot of love. Love for the people in our community who are isolated and impacted by rare neuroimmune disorders is the foundation of our organization, and that same love draws more into the medical fields that directly support those with our conditions. Dr.Greenberg, for instance, just helped us to create a series of micro-learning courses that those who would like to know more about rare neuroimmune disorders can take to learn. As Dr. Greenberg puts it, “Knowledge is power, and understanding your condition provides invaluable insight into the approach to care. These micro-learning courses will hopefully give patients and families around the world access to information that will empower them to chart an effective treatment plan.” Another individual, Tiffany Grezmak, wrote about her experience pursuing neuropsychology in relation to rare neuroimmune disorders after attending a SRNA Rare Neuroimmune Disorders Symposium. She stated the following:
“I have come to appreciate how much remains unknown in the realm of rare neuroimmune disorders, highlighting a substantial gap in our understanding. This realization is incredibly exciting for me, as it presents an opportunity to contribute to the field through my future career. I am motivated by the potential to help bridge this gap, advancing our knowledge and improving the care and outcomes for patients with these complex conditions.”
Although these rare diagnoses may seem daunting to many in medicine, there are these odd few who look at our disorders and accept the challenge despite the difficulty and complexity they often bring. Why take on our case? Out of love. They choose to take care of us because if they don’t, who else will? And this trend of love continues to draw more and more amazing medical professionals into our circle, all of which are dedicated to members of our community. There is no cure yet, but there are people who care.
There is no cure yet, but there is recovery. Sandra Ekas states in “My Journey to NMOSD” the following:
“Well, here we are almost 6 years after being told I have NMOSD. I have graduated college, got married, bought a house with my husband, got a dog, and haven’t had my infusion in 8 months because we are trying to conceive a baby. No matter how hard your journey is, there are people out there pushing for you to achieve great things. Whether it is your doctors, family, friends, or even a random stranger: do not give up because there are people who can and will help.”
Even if there is no cure, there is the possibility of a wonderful life. People like Sandra Ekas prove that, working tirelessly to craft out her dream life. Although these disorders make things harder, all the little milestones are intensely more celebration worthy. Our diagnoses leave us with a changed perception, and with time, I became more grateful for that aspect of illness. Everything feels beautiful because for a time, nothing felt possible.
This is what I believe about the struggle for a cure—it hurts that it hasn’t happened yet, but it’s wonderful that people are trying. It’s wonderful that people with these disorders are striving to live good lives regardless of their diagnoses, and it’s wonderful that we have chosen to become a family and support one another, even if our journeys all look a bit different. We are the same in the most important ways, and I’ve never felt more at home than when I’m in a room with members of our community, and I can look around and see my life, my sorrows, my joys reflected in someone else’s experiences. I was angry there was no cure at first, and sometimes I’m still angry. But most of all now, I’m grateful to see you all and to be seen.
