Embracing Change with Neuromyelitis OpticaI've certainly had my share of unexpected twists and turns since my diagnosis with neuromyelitis optica (NMO). This autoimmune disorder shook up my life plans, forcing me to adapt to... By Helen Lear-Grant3 min readBookmark for laterReactions0reactionsComments1 comments
Record Your JourneyI record everything. Since the day I was diagnosed with neuromyelitis optica (NMO), I have always felt the need to record and take pictures of my journey. From the symptoms... By Avery Allmond2 min readBookmark for laterReactions0reactionsComments0 comments
Medical Gaslighting and MeEver since I was a child, my life has been nothing but a comedy of medical errors. I am one of those people who would not catch the normal flu... By Kshirja Singh3 min readBookmark for laterReactions0reactionsComments2 comments
A Toast To CaregiversIt’s been a long journey with neuromyelitis optica (NMO). I’ve had to learn how to better help my health and learn new ways to do things. I’ve also had to... By Dan Marino2 min readBookmark for laterReactions0reactionsComments0 comments
My First Shopping Experience In My WheelchairConfidence is the most beautiful aura one can wear in public. The feeling of wearing an invisible security blanket around yourself and loving every part of your being is priceless... By Aldelly V.2 min readBookmark for laterReactions0reactionsComments0 comments
From Misdiagnosis to DiagnosisGetting a diagnosis for a mysterious ailment can feel like searching for a needle in a haystack. It's frustrating, disheartening, and sometimes downright infuriating. My journey to an accurate diagnosis... By Helen Lear-Grant2 min readBookmark for laterReactions0reactionsComments2 comments
Bring On The Love This HolidayIt’s been several years since my last full blown family holiday season. Now that I think about it, been about five years. Holidays used to be so big and important... By Dan Marino2 min readBookmark for laterReactions0reactionsComments0 comments
Meeting My Service PupThe first year of my diagnosis was rough. I’ve never felt so alone, so unwanted and so broken in my life. The friends that I had were slowly burning out... By Avery Allmond2 min readBookmark for laterReactions0reactionsComments0 comments
My NMO Christmas ListMy neuromyelitis optica (NMO) wish list: As the iconic song “All I want for Christmas is You” by Mariah Carey goes, it opens the Christmas spirit in me and most of... By Aldelly V.2 min readBookmark for laterReactions0reactionsComments0 comments
Trust Your Voice: Understanding Medical Gaslighting and NMOImagine going to the doctor for help, but they don't take your symptoms seriously or tell you it's all in your head. This is called medical gaslighting. It can make... By Helen Lear-Grant2 min readBookmark for laterReactions0reactionsComments0 comments
My Tips For Your First Spinal TapI had my spinal tap whilst staying in hospital during my first attack. I wanted to avoid it as much as possible because at the time, every time I moved... By Haleemah Sarwar2 min readBookmark for laterReactions0reactionsComments2 comments
Shining a Light on Your NMOSD ExperienceWe want to learn more about our community members living with neuromyelitis optica spectrum disorder (NMOSD). Each NMOSD journey has common threads, but the individual experiences are unique and can... By Neuromyelitis-Optica.net Team1 min readBookmark for laterReactions0reactionsComments0 comments
NMO and Covid…AgainThe day I heard Covid was poking its head out again in the news, I got it. My friend went back to New York to take care of her mother... By Dan Marino3 min readBookmark for laterReactions0reactionsComments0 comments
Warning SignsGetting to know your body is very important when living with a chronic illness like NMOSD (neuromyelitis optica spectrum disorder). With the years I have living with NMOSD I’ve learned... By Aldelly V.3 min readBookmark for laterReactions0reactionsComments0 comments
Stop Telling Me “You’re So Strong”You’re so strong. I don’t know how you do it. You’re so young to be dealing with this. You’re too young to be doing this. With a rare disease diagnosis... By Avery Allmond2 min readBookmark for laterReactions0reactionsComments0 comments
A 13 Hour Flight After Rituximab InjectionI haven’t been abroad for 7 years. I didn’t go anywhere for the last two years because of my NMO (neuromyelitis optica) attack. My mother and I decided earlier on... By Haleemah Sarwar3 min readBookmark for laterReactions0reactionsComments2 comments
Vacationing In A WheelchairIt was 10 years in September since I became paralyzed due to an NMOSD (neuromyelitis optica spectrum disorder) flare up. I finally have both my hips replaced and I am... By Teaira-Daniels4 min readBookmark for laterReactions0reactionsComments0 comments
Vision Changes and My Mental HealthWell, I made it. It was a long stressful summer of illness all around. From depression to a car of screaming cats, I made it back to New York. Now... By Dan Marino2 min readBookmark for laterReactions0reactionsComments1 comments
Language BarrierNavigating the healthcare system is hard enough for a regular English-speaking person. But imagine being diagnosed with a rare condition like NMOSD (neuromyelitis optica spectrum disorder) and English not being... By Aldelly V.2 min readBookmark for laterReactions0reactionsComments0 comments
Finding Balance: Navigating Toxic Positivity and Neuromyelitis OpticaLife is a beautiful journey filled with ups and downs. It's natural for us to experience a wide range of emotions as we go through life. However, society's focus on... By Helen Lear-Grant2 min readBookmark for laterReactions0reactionsComments0 comments