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.
NMOSD Awareness Month 2024
Let’s #talkaboutNMOSD
This teaser video, created for NMOSD Awareness Month 2024, sheds light on the impact of neuromyelitis optica spectrum disorder (NMOSD), a rare and debilitating autoimmune condition. Featuring personal stories from Els, Matthias, Leda, Souad, and Elisabetta, it highlights the importance of listening to one’s body, tracking symptoms, and fostering open communication with healthcare proffesionals. The video calls for increased awareness, timely diagnosis, and better management to empower individuals living with NMOSD and improve their quality of life.
Neuromyelitis optica spectrum disorder, or NMOSD is a rare, severe relapsing neuroinflammatory autoimmune disease that attacks the optic nerve, spinal cord, and brain stem.
Over 10,000 people live with NMOSD in Europe.
The impact on patients suffering from this dreadful disease is devastating and without accurate, timely diagnosis and management, these patients can often end up blind or wheelchair bound.
March is NMOSD Awareness Month, a whole month dedicated to patients and carers united to raise awareness of this often debilitating condition.
This year we are focusing on the importance of patients listening to their bodies, tracking their symptoms, and most importantly, having open and honest conversations with their doctor.
Els, Matthias, Leda, Elisabetta and Souad have all been diagnosed with NMOSD.
Even though they have different stories, they all agree that speaking to their doctor is critical, especially with a disease as rare as NMOSD.
Souad Mazari, France: The patients, they really really know their symptoms. They know their body. Each patient knows when something is wrong. If you have a new attack, you will feed it. Don’t be afraid. Go back to the doctors, push the doors of the hospital. Don’t be afraid.
Leda Bresnov, Denmark: Knowledge is power and having a good communication with my doctor about my symptoms, doubts and fears as well as going to my regular check ups helps me understand and deal with my NMOSD in daily life.
Elisabetta Lilli, Italy: I was diagnosed with NMOSD nine years ago. NMOSD doesn’t always announce itself loudly. Sometimes it whispers subtle changes. That’s why it’s crucial monitoring and vigilance of my body. Sharing experience is fundamental as is providing support in managing the complexity of the disease.
Matthias Fuchs, Germany: I’m an NMOSD patient for over 10 years. When talking to your doctor, it is extremely important to discuss all your health problems very openly. There are no issues that are unimportant or even embarrassing. Only if your doctor knows your symptoms, the symptoms can be treated.
Els Roelandt, Belgium: Even the smallest thing can be a key that leads to something else. A hiccup, a nausea, pain in your eyes, nerve pain, numbness in limbs or in fingertips, everything. Don’t be afraid, talk to them about it. You will be reassured and the doctors can understand better what this disease is.
This NMOSD Awareness Month, let's come together to raise awareness of this devastating disease.
For more information, visit the NMOSD In Focus website: www.NMOSD-in-focus.com
#TalkAboutNMOSD
#TalkToYourDoctor
#NMOSDAwarenessMonth
