Hello all,
It's leap day! What are you going to do with your extra day of the year?
Since it is also Rare Disease day I am going to raise awareness about a rare disease that has affected my life. It is called Neuromyelitis Optica also known as Devic's Disease and my mom was diagnosed with it 2009. Because it is so rare, she was miss diagnosed three times.
I am hoping by dedicating my blog to NMO today I can do my small part to spread the word about this disease. Maybe you are or know a nurse, doctor or someone else in the medical field. Please take the time to read this blog and watch the videos. Pass it on to everyone you know. It may be rare, but its real and is affecting family's like mine all over the world. If the doctors would have diagnosed her with NMO earlier it could have prevented her from becoming paralyzed.
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| My mom and I 7/14/09 |
The photo above was taken a few weeks before her paralysis started. I remember she wasn't feeling that great, but still came to celebrate my birthday with me.
This is a video that was made for You Tube to spread awareness of the affects of NMO. Before you watch, please note that my mom has made much progress since this video was made, but it's a real eye opener.
She has also been featured on a television show in Canada. Another awesome way to raise awareness.
Here is the definition of NMO
From Wikipedia, the free encyclopedia
Neuromyelitis optica (NMO), also known as Devic's disease or Devic's syndrome, is an autoimmune, inflammatory disorder in which a person's own immune system attacks the optic nerves and spinal cord. This produces an inflammation of the optic nerve (optic neuritis) and the spinal cord (myelitis). Although inflammation may also affect the brain, the lesions are different from those observed in the related condition multiple sclerosis (MS).[1]weakness or paralysis in the legs or arms, loss of sensation (including blindness),[2] and/or bladder and bowel dysfunction.[3] Spinal cord lesions lead to varying degrees of
Devic's disease is a rare disorder which resembles MS in several
ways, but requires a different course of treatment for optimal results.[3] NMO has also been suggested to be a variant form of acute disseminated encephalomyelitis.[4]. The likely target of the autoimmune attack at least in some patients with NMO has been identified; it is a protein of the nervous system cells called aquaporin 4.[5]
Like I said before, she has been doing very well and has come a long way. She is a fighter and refuses to let this disease take over her life. She is determined to walk again and I support her 100% It's going to take time and perseverance, but I know she can do it.
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| My mom and I at her first annual Easter Egg Hunt 2011 |
Don't get mad at me mom. I know you don't like this picture, but I think it's cute and I like the Easter bonnet. :)
If you would like to contact my mom or check on her progress you can visit her blog Keeping Up With Carla http://carlaweller.blogspot.com/
To find out more about NMO you may also go to the Guthy Jackson Foundation website. It is a great resource. http://www.guthyjacksonfoundation.org/
Thank you for taking the time to read my blog today. More cards to come tomorrow!
Happy Creating!
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