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In My Words | Sandra Adda
For Sandra, NMO patient advocacy is not a job, or a chore, it is a way of life. Her illness has deepened both her resilience and her compassion. She loves helping others achieve their full potential.
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Mysterious and challenging life experience. Living with NMSOD
My journey began with a non definitive diagnosed illness, I have learned NMSOD mimics other illnesses from lupus to MS. I stayed at many hospitals with the Hope I would be cured. Had tried all types of medications, from morphine to calm me (mind though at ER everyone thought I lost my mind due to…
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Rare disease has taught me to live one day at a time
My life changed a few months ago when I heard doctors tell me they had a diagnosis for every weird and unexplained symptom I’ve had in the last 6 months. At some point I felt like I went crazy, because I felt so exhausted, constant headaches, unexplained nausea, some skin rash that was really bothersome,…
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I’ve had NMO 12 years
I was diagnosed with NMO August 2nd, 2009. It all started in my opinion nerve in my left eye. Every time I had a flare up I would have IV prednisone and that would help. I Hasan MRI of my brain to see if I had MS. That came back negative. This all started in…
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Monica’s Story
My story with NMO. Im 43 years old and was diagnosed with lupus about 12 years ago. I’ve since then have had half my thyroid removed and had ovarian failure when I was in my late 20’s. Overall I’ve managed lupus well which I take plaquenil and courses of steroids when I have flares. In…
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Diagnosed 5-19-2021
My story begins on February 16th, 2021. I have spent 40 years in public service and was approximately 2 months from retirement. On this particular day, I received a medical procedure from my orthopedics to numb the nerves in my neck for a pain assement review. The following day, I recieved the first moderna covid…
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My Story
I had my daughter in July of 2011, in November I noticed when at a stop sign when I darted my eyes left to right to look for cars I was having pain in my eyeballs literally. If felt like the were being pulled from their sockets. I summed it up to having 3 young children. When it started to bother me,…
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On a long quest to cure myself (22F, Southeast Asian)
Where I’m from, our medical literacy rates just shyly reach 1%. Our country doesn’t get involved with much R&D, especially in the medicine section. Many of the community still believe in pseudo-science just because it sounds ambiguously scientific. I was 17 in 2015, my senior year of high school, and I was gearing up for…
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Well…….This is Inconvenient
Diagnosis: AQP4-IgG seronegative NMOSD (NMOSD with no antibodies) So here’s my story….. Buckle up! First, some background; I’m a Hispanic female, current age: 38.5. I’ve been an athlete since birth, parents made sure we ate fresh healthy foods. Always water or fresh juice and milk.. Never really had junk etc, until my step mum came…
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How? I was SO healthy!
For a year I was super healthy, dropped 100lbs and was well on my way to my dream career. In the matter of 3 months, my entire life had changed. For 2 months my doctor ran every test they could think of while I had dropped almost 30 lbs from the inability to keep anything…
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A new Journey with NMO
Hello world of NMO Around August 2019 changes started happening in my body that were foreign to me. By process of elimination and common logic, I wrote it up to stress, change in seasons, my new hobby for running. By the time I went on holiday in October, my right hand was shaky. Still I…
