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In our first episode, we welcome our hosts of the NMOSD Your Way Global podcast series Lelainia Lloyd and Debbie Leticq.
The development of this podcast was sponsored by Alexion Pharmaceuticals, Inc. The viewpoints expressed are those of the persons speaking and not of Alexion. If you have any questions regarding diagnosis or treatment please speak to your healthcare professional. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. © 2023, Alexion Pharmaceuticals, Inc. All rights reserved.

Patient advocate and founder of The Sumaira Foundation, Sumaira Ahmed, discusses her personal journey to diagnosis and how that inspired her to create a foundation to help others facing this life changing condition.

As a second-generation Bengali-Burmese Muslim woman, Sumaira asks host Lelainia Lloyd, what if her parents hadn’t emigrated to the US and she had received her NMO diagnosis in a developing part of the world - what would have happened to her?

It was this realisation which motivated the international expansion of her foundation. Sumaira describes her determination as a patient advocate, in trying to bring multi-language resources...

In this episode, host Debbie Leticq speaks to neurologist Dr. Lesley-Ann Hall about her own journey to diagnosis, living with an ‘invisible illness and why it’s important to get an accurate diagnosis as soon as possible.



Dr. Lesley-Ann Hall explains how the International Consensus Diagnostic Criteria for Neuromyelitis Optica Spectrum Disorders, published in 2015, has really helped clinicians solidify certainty around an NMOSD diagnosis.



Dr. Hall also discusses the importance of supporting people to manage the day-to-day symptoms that they experience by giving them the knowledge and knowhow to be able to manage their NMOSD.
The development of this podcast...

Historically known as Devic’s disease, for years NMO was considered a distant cousin of MS; however, today we now know that not only is NMOSD a completely different and distinct disease from MS, but it also has completely different treatments.



Dr. Daniel Selchen, a neurologist and senior consultant at the MS clinic at St. Michael’s Hospital in Toronto, Canada explains the importance of receiving a correct diagnosis and discusses the advances in care for NMOSD patients.



Host Lelainia Lloyd, who was herself misdiagnosed with MS, also discusses her own diagnostic journey which involved repeatedly testing seronegative for aquaporin-4. She asks...

Neuro-immunology nurse specialist and research fellow, Dr. Therese Burke joins Debbie to discuss diagnosis and how to take back control. They discuss the need to trust your instincts if you feel you’re not getting the right answers.

Dr. Therese Burke shares her experience of working with NMOSD patients, many of whom would tell her that deep down they just knew something wasn't right, and they continued to seek help until they found the help that they needed.

For those who are diagnosed, there is so much happening in such a short period of time, Dr. Therese Burke and Debbie discuss...

Dr. Galina Vorobeychik, director of the Fraser Health Multiple Sclerosis Clinic at Burnaby Hospital and assistant professor of neurology at the University of British Columbia, joins host Lelainia Lloyd to discuss the importance of a team-based approach to treating NMOSD.

Dr. Vorobeychik discusses the importance of coming to an appointment prepared with questions or notes and making sure that you tell your neurologist about any changes in symptoms or any new concerns since your last visit.

Dr. Vorobeychik also explains the ways in which members of the clinical team can contribute to optimal care and how patients and caregivers can partner with...

Host Debbie Leticq talks with psychologist Dr. Sally Shaw about how to manage the uncertainty of living with a condition like NMOSD and how to deal with the unpredictability of relapses and of not knowing what their long-term impact may be.

Dr. Sally Shaw discusses the importance of practicing self-compassion by acknowledging that being diagnosed with NMOSD is a big deal and by allowing yourself to feel all the stages of grief. They talk about the importance of not shying away from those difficult conversations.

Dr. Shaw explains the ways in which building authentic and genuine relationships, the kind of relationships which...

Neurologist Dr. Dalia Rotstein discusses the most common types of attacks we see in NMOSD, such as optic neuritis, spinal cord attacks, bladder or bowel dysfunction and nerve pain such as burning or pins and needles.

Dr. Dalia Rotstein also explains some of the less common types of attacks, how to recognise the early warning signs of an NMO attack and how you can advocate for yourself when seeking care during a relapse.

Dr. Rotstein focuses on the importance of seeking urgent medical attention for any new symptom, or for any symptom which is significantly more severe than it is normally and...

Many patients with neuromyelitis optica spectrum disorder may experience relapses, but not everyone will experience them in the same way. Our host, Debbie Leticq talks to neurologist Dr. Lesley-Ann Hall to help understand the nature of relapse and recovery in NMOSD.



Neurologist Dr. Lesley-Ann Hall discusses the importance of early recognition, confirming that it is a true relapse with your GP or neurologist early in order to help limit long-term damage.



Dr. Hall explains what is meant by a multidisciplinary team approach, which looks not only at treating the inflammation which occurs with NMOSD, but also at treating the person...

Dr. Reebye explains the role of physical medicine and rehabilitation (PM&R) physicians, also known as physiatrists, in treating medical conditions such as NMOSD.

As a physiatrist, Dr. Reebye is a proponent of the benefits of early intervention with exercise and stretching even during an NMO relapse. He explains the importance of motivating patients to maximise their abilities, even if there is a declining function.

Dr. Reebye also discusses the physiology of pain and how we can better equip ourselves to manage NMOSD by learning about our own unique experience with pain and in learning to express it accurately to our clinical team....