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Neurology Breakout Session

In this session on neurology diagnoses and clinical trials in autoimmune disease, panelists discussed patient experience in clinical trials and community building, as well as upcoming research.

Recorded October 2021 at the Autoimmune Community Summit.

The panelists included:

Patient Experience & Advocacy

Sumaira Ahmed: “When you’re sick at a young age, you feel lost amidst a complicated diagnosis that many people around you don’t know about.  I started the foundation, but I was also in tandem going through my own personal journey, trying to wrap my head around NMO (Neuromyelitis Optica). That’s when I put my self-advocacy hat on and realized I have to take matters into my own hands. I pieced together components of my health journey into a story. It’s so important to step up and become your own advocate because sometimes we know our diseases and how it manifests more than the clinicians around us.”

Jenna Green: “That’s what I love about having this disease, that sounds ridiculous, but I love having that connection, and that’s helped me connect with other people who understand, ‘I need to take a nap after I take a shower’. There needed to be a change in public perception of people living with chronic illness and autoimmune disease and disability. Essentially I don’t shut up about it; apparently that’s advocacy.”  Jenna often testifies at State houses as part of her advocacy but says “you don’t have to be speaking at the State house to make a difference. All of our stories, all of our voices, all of those things matter, those are critical.”

Whitney Carter:  She was diagnosed with Lupus when she was 14 and later with autonomic ganglionopathy.  “I actually didn’t get involved in advocacy till after I’d been sick for 8 years.  I also didn’t have a choice in sharing what I had, because as a freshman in high school everyone knew. I missed half the school year, it was obvious. It was never private; I just never had the option and then I just never tried to make it private.”

Damian Washington: “I know that if I am in the world and people can see me, perhaps it could help them. And I make videos to help people feel less alone.”

Clinical Trials 101

Sarah Loud opened the panel by walking through the role of clinical trials in treatment development and advised how to find research opportunities that are right for you. She even role-played a Myth Buster debunking 8 common myths!

Dr. Bar-Or talked about advancing knowledge about autoimmune conditions to target different aspects – something he strongly feels must be a part of clinical trials. Specifically, he covered:

  • What may trigger autoimmune conditions
  • What can be done to prevent or catch them early on
  • How to prevent impairment over time

He notes that we can learn a great deal more about advancing particular therapies and conditions so the next generation of treatments will do better than what is currently available. He emphasized the importance of autoimmune patients participating in clinical trials to help advance knowledge and contribute to new therapies.

‘What is currently lacking in research and what can be improved upon is the relationship between providers and trial participants, especially after the trial has ended’. Peer reviewed data could be provided in a lay-person friendly way, so participants can understand what the study is determining.

Tamanika, who has neuromyelitis optica spectrum disorder (NMSOD) shared her experience participating in clinical trials when she was first diagnosed, when there weren’t FDA approved treatments available.  She’s grateful that every time she sees her doctor they ask if she would like to participate in clinical trials.

“I do feel, as a patient, I want to participate when given the opportunity, because I feel like that’s the only way that we can help and learn, because I know my neurologist always tells me I’m the expert on my body.”

Both Tamanika and Dr. Bar-Or discuss individual responsibility to best assess whether a clinical trial is right for them and how individuals can work with their study team and healthcare provider to help understand where the trial fits into their lives and their risk tolerance. Sarah exemplifies involvement and reminds that there are a wide range of trials, such as exercise, diet, and purely observational trials where you can contribute to the understanding of the disease.


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