2022 International Survey and Listening Sessions

In 2022, the Siegel Rare Neuroimmune Association (SRNA) developed a survey and held community sessions to learn about the lived experiences of those diagnosed with a rare neuroimmune disorder and  their care partners outside of the United States. Over 130 people participated in this project. Most participants lived in Europe or Oceania, although some lived in South America, Southeast Asia, and North America.

The Survey 

People living in 20 different countries completed the survey. 89% of respondents were individuals diagnosed with a rare neuroimmune disorder and 10.2% of respondents were care partners or family members of someone diagnosed. Responses included a range of experiences from those with Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), and Transverse Myelitis (TM). 

Most respondents described having knowledgeable and helpful healthcare providers as the most important aspect of their experience with a rare neuroimmune diagnosis. Difficulties obtaining a diagnosis due to dismissal of symptoms or clinicians’ lack of knowledge were also common. Others described the lack of rehabilitation services, treatments, or therapies as other issues.

“I feel like medical professionals in Australia (including neurologists) don’t really understand TM. When presenting with symptoms or issues, I always feel brushed off and not really getting the information, treatment or support I need.” 

Many worked to find resources or other information about their diagnosis outside the medical system. Others described general accessibility and mobility barriers and public understanding of these disorders and disabilities as issues related to living with a rare neuroimmune disorder in their communities. 

“My initial experience after being transferred to a ward from A & E, with neurological symptoms, at my local hospital was absolutely appalling.  I discharged myself and left the hospital to self-refer to a private consultant, which led me to get the proper treatment and support that I needed.”

The Sessions

Five community sessions were held during this project. 8 countries were represented from across Oceania, Asia, and Europe. 96.3% of attendees were individuals diagnosed with a rare neuroimmune disorder. People with Acute Disseminated Encephalomyelitis (ADEM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), and Transverse Myelitis (TM) participated.

During these sessions, conversations revealed the importance of accessing doctors and other healthcare providers who understand rare neuroimmune disorders and rehabilitation options. Those living outside the United States and the United Kingdom noted a lack of local resources but look to the SRNA and Transverse Myelitis Society (TMS) for information and support. 

“I think through the internet and everything, every kind of support is there, but there’s no localized support, for instance, in India. It’s very tough to meet someone with this physically. And I think that does help seeing people, meeting people and sharing stories in person, I think that might have a good impact.” 

Like the survey respondents, many session attendees wanted to know more about medical care, understanding their diagnosis, and rehabilitation. Most participants expressed difficulty finding out information about their diagnosis and had to take the initiative to learn more independently. 

“One thing I still find difficult is explaining it to people. If I explain it too much, they think I’m worse than them and they try to help too much. Being able to put it in words that they are going to grasp and always being kind to them is one of the hardest things. You can’t just sum it up in a sentence.” 

Several participants described their ongoing experience related to their disorder, often learning from the SRNA and TMS what practices are most helpful. Several participants had to search on their own for the best practitioners or local support for their needs (for example, Pilates classes, physical trainers, or mental health counselors). 

The Big Picture

We found many of the challenges for those with rare neuroimmune disorders internationally are consistent with the experiences of those who live in the United States. These challenges include difficulty navigating the healthcare system, a desire to connect and find support with others who share the experience of a rare diagnosis, understanding the disorders, and adjusting to a new life after a diagnosis. 

Of those who completed the survey, the top three SRNA resources or programs utilized were the disease information pages, support groups, and social media page(s). Session participants named SRNA podcasts, symposium videos, and the SRNA blog as top resources that were helpful to them.