I am still the Avery of the past | Avery’s NMOSD story
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- Опубликовано: 9 июл 2024
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Avery was diagnosed with NMOSD at just 20 years old, but despite the daily challenges, she has stayed true to who she is. Watch Avery tell her story here.
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Thanks for sharing . I was having symptoms since 12/31/22. After 3 long months of testing, ER, specialist etc. I was just diagnosed with NMO 3/30/23. Admitted same day for treatment. Spent 15 days in hospital. Infusion, steroids & Plasmapheresis.
Praying for you & all of us with NMO. Lord hear our prayers 🙏🏻
How are you feeling now I hope you’re way better
Thank you for this opportunity! Let’s cure NMO!
I am also suffering from NMO
May God cure us all Ameen
Aameen
Are you malayali
My history was different I had painless vision loss and got diagnosed with MS and had medicatbion for it but vision kept on getting worse and 7 years later got a diagnosis of nmosd. Central vision is almost fully lost. Always with high hopes! Blessings for everyone dealing with this!
My daughter is undergoing treatment for NMO from today
Numbness tingling in hands n legs from last 2 months
Pray for her
Strong young lady. God Bless
This is Amoy Lewis a 24 year old Jamaican who has been battling a rare autoimmune disease known as NMOSD which can be very fatal. The disease has take a toll on her body and she is fighting to stay afloat. She has lost her mobility but still attends University and works on a part time basis. Recently she was given hope being able to return to a “normal” life if she undergoes treatment. The financial strains are great and so we are seeking your assistance to make her treatment possible. Please click the link and donate as well as share! Thanks so much in advance
I was diagnosed May 2021. Thanks for sharing! Hugs
How can i find the girl n the video we have the same story but im struggling with accepting this fait
Strong girl , I know how it feels :( I know it is hard but we can get through this! ❤️ #nmostrong
My granddaughter was diagnosed a few months ago three week stay in hospital and released, she is back in hospital with different symptoms all caused from this illness 😢
I was diagnosed with it when I was five, I’m currently 17 so I had it for over 12 years so I know what you’re going through
Can a patient of nmosd can hav blood cancer ? My brother was taking medicnes of nmosd steriods etc and now his hb is getting low and thre is doubt of blood cancer.plz tel me if u hav same story like my brother
M also diagnosed with nmo on 2017 ,,,and now since three year passed I got several heath issues,,,like low eyeside,,pain and stiffness in legs,,backpain,,,but m still fighting.and now I got second attack of this disease.
Keep fighting. I was diagnosed in 2019. I am learning to walk again🙏🏾
We will do this as a family I promise you. My 🌺
I was diagnosed of nmo 2016 and I understand how you feel. I offer this in the hands of God, I will pray for you and everyone with nmo. God bless us all.
Have the same diesase
Hi friends ,my sister is facing NMO currently.. blindness is her problem(last 1 week).she is zero negative NMO. (NMO anitbody result is negative )..is there any condition like this.. not getting any positive response from anyone... ongoing treatment is plasmapheresis..what we have to do next..pls reply
I was just diagnosed in June of 2022, with MOG-AD. Originally doctors thought it was NMO. I tested negative for NMO & positive for.MOG. They are similar. I had a crazy attack this year and was in ICU for a few months. I went blind, paralyzed. I was on a ventilator, and had a trach in my throat. they started treating me with steroids, then 7 days of plasmapheresis & then a infusion of Rituximab. My eyesight came back for the most part, not 100% yet, and had to relearn how to walk again through physical therapy. Hope this helped.
But I am suffering from different disease called hashimoto’s disease known as thyroid disease
Is this curable or not ? People die from nmosd ?? Plz answer my question plzz
Dear Sheri Baswi, thanks for your comment. There is not a cure for NMOSD, but several companies, including Roche, are studying the potential of therapies to reduce relapses and improve care. Please find more information about NMOSD and our efforts here: go.roche.com/nmosd
I thought I could help by sharing my experience. I was diagnosed with nmo in 2006, after having sensory symptoms like numbness and pin and needles on my legs. I mostly prevented new attacks taking imuran, while steroids helped when I had a full attacks that left me numb waist down. Fortunately, the symptoms would go away after steroids and I never had anything permanent. However, around 2011 -2012, imuran stopped working to prevent new attacks. In 2012, my neurologist switched my treatment to rituximab, which I have been getting every 4 months and will have to do for the last of my life. This treatment is a monoclonal antibody (against cd20) that kills all the B cells in your body, so you no longer can produce antibodies. So new attacks are prevented but you are also more vulnerable to other diseases, since you become immunocompromised. I still think it is better to be immunocompromised than living with nmo at risk of new attacks.
I hope someone reading this can find comfort and help with my experience.
@@prisiesser hi! What doctor treated you? And where is it?
@@prisiesser hey, who was the doctor that helped you? we are in search for a doctor that has treated NMO
I have one of the most severe NMOS, my first year I had 8 severe attacks even steroids could not completely stop it only revert for 20 days. I spent almost the whole year in the hospital due to all these attacks when they found nmo game me Rituximab, attacks stopped and now I only have the remaining sytoms I lost one of my eyes and I have issues with memory, or walk correctly and convulsions, but the attacks stopped which is the most important.
doctors told me they have never seen such an agressive nmo in such a young person so I can asure you that even if it is progressive if you use rituximab or any effective treatment you will keep going, since I had my first rituximab treatment I did not have any attack again I have almost two years with this treatment and I am relieved, I exercise and have almost normal life. stay safe my friend.
Is it cureable
nope
I’m so glad I don’t have that disease