Life Expectancy with NMO, NMOSD and Devic’s
Have you recently been diagnosed with Neuromyelitis Optica? If so, you’re likely overwhelmed with a thousand questions. NMO, also known as Devic’s Disease or more commonly today as NMOSD, is a rare and often misunderstood chronic autoimmune disease.
What exactly is it? Can I still live my life the way I used to? And what is the life expectancy? These questions definitely haunted me when I received my diagnosis, and I can imagine they are weighing heavily on you too. In this blog, I want to share my findings and personal journey to offer you some clarity.
Life Expectancy with NMO, NMOSD and Devic’s
I know how you feel
As you may know, I live with NMOSD myself. It can be both an exhausting and a challenging condition. Exhausting because you can feel so incredibly tired, from the medication, your overactive immune system, or simply the mental toll of the stress you’re under. The endless questions about Devic’s disease keep spinning in your head, and you might feel deeply anxious. Please know that this is normal, and I recognize it all. I have been where you are right now.
Life Expectancy with NMO, NMOSD and Devic’s
Facing the scary questions
Let’s be honest: the question “will this shorten my life?” is not a pleasant one, but it’s a thought that often kept me up at night. With NMO / NMOSD, we deal with inflammation in the optic nerves and the spinal cord. We know that every attack (relapse) brings a risk of residual damage. But does that mean you can’t grow old?
Life Expectancy with NMO, NMOSD and Devic’s
Can you grow old with NMOSD?
Let me start with the most important answer: Yes, you can live a long and full life with NMOSD. As long as you have the right medical guidance. Fortunately, you are in good hands. Medical science is advancing rapidly, and treatments for the entire spectrum of this disease are improving every day.
In my own journey, I have learned that taking immediate action is crucial. I’ve noticed that when I experienced new symptoms, being hospitalized immediately for an IV treatment was key. This limits the damage of a new attack and is essential for a “good” recovery.
My advice to you: Be alert. If you suspect a new inflammation, act fast. Put yourself first and call your neurologist immediately. Explain your symptoms and tell them you are worried. By advocating for yourself, you can ensure that damage remains limited. With NMOSD, acting quickly is truly life-saving.
Hope and your own strength
Every study I have read confirms that with the correct treatment, the disease progression of Devic’s disease can be slowed down. While everyone’s journey is different and there is no simple answer for how your specific case will develop, I want to urge you: always listen to your body. The faster you respond to your body’s signals, the better you can be helped.
Do you have questions for me or do you just want to share your story? I would truly love to hear from you. Feel free to share this post via the social buttons below; together, we can raise awareness for NMO, NMOSD, and Devic’s disease.
