This website is intended for a European audience and is made available by Amgen.
This website is intended for a European audience and is made available by Amgen.
Dr. MARIA SEPULVEDA: Understanding invisible NMOSD symptoms
This video features Dr. Maria Sepulveda discussing the invisible symptoms of neuromyelitis optica spectrum disorder (NMOSD), including chronic pain, cognitive deficits, fatigue, depression, and sexual dysfunction. These symptoms significantly impact patients' quality of life, mental health, and daily functioning. Dr. Sepulveda highlights the importance of open communication with healthcare professionals and access to mental health resources, offering a hopeful outlook for improved treatments and support for NMOSD patients.
[Dr. Maria Sepulveda, Neurologist and Head of the NMOSD-MOGAD unit at Hospital Clinic of Barcelona, Spain]
In NMOSD, visible attacks affecting optic nerve, visual function, spinal cord, strength are well known. But current research suggests that people with NMOSD suffer from other invisible symptoms. Pain, cognitive deficits, depression, fatigue, sexual dysfunction are the main invisible symptoms in NMOSD.
70% of patients suffer from chronic NMOSD-related pain. 40% patients with NMOSD suffer impairment in attention and in information processing speed. Fatigue is more frequent and in people with NMOSD than general population, and also 3/4 of men and women with the disease suffer sexual dysfunction. These invisible symptoms has been significantly associated with decreased quality of life and with increase in anxiety, depression, and disability status.
Invisible symptoms have a great impact in long term quality of life. Pain severity has been associated with depression in NMOSD patients and higher fatigue score has been linked to sleep disturbance. These invisible symptoms together, of course with the symptoms derived from attacks can affect not only functionality of the patients, not only the self-care of the patient but also the community participation, employment or also changes in relationships.
It is very important for the patient not to under report these invisible symptoms. It is very important to discuss with your medical, with the medical professional if the patients are suffering pain or depression or sexual dysfunction, because this is important to initiate an adequate treatment and to establish the collaboration with other professionals and to manage the 'cause that is causing the distress in the patient. But if the patient, of course, is suffering these invisible symptoms, it is also important to externalise their feelings, also with their loved ones, with their doctors, of course, trying to alleviate emotion generated by the problem.
NMOSD neurologists must commit to give detailed information about the disease, the treatment and about what to expect at the time of the diagnosis and what to expect about the future. And of course, giving a follow up and provide mental health resources at any time of the course.
My advice to patients when speaking to the doctors is to discuss all symptoms in order not to leave any doubt about what is happening with me, what is happening with my disease. It is very important to disclose all all the symptoms without worries.
Future for NMOSD patients looks hopeful. With more options of treatment, better knowledge of the disease, better quality of life for people with the disease. I would like to see more patient advocacy and more health authorities’ commitment in order to have more health and rehabilitation resources.
If you or someone you know is experiencing any of the symptoms mentioned by Dr. Sepulveda, we encourage you to talk to your doctor to explore effective management strategies.
For more information on NMOSD and patient resources, visit:www.nmosd-in-focus.com.
