Living with NMO: Candace Coffee
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- Опубликовано: 1 апр 2010
- Neuromyelitis optica (NMO) affects people from all over the world. It sees no boundaries with those who are physically fit and those who are not. This is a story told by an active young woman named Candace Coffee who was diagnosed with NMO in 2002. After viewing the video if you want more information on Candace, please visit her website at: www.cureforcandace.com.
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I am lucky enough to know Candace, and SO beyond blessed to be able to call her family and the mother of my nephews. She is the most INCREDIBLE person I have ever met, and without a doubt the strongest. She has been through SO much and still manages to have the most positive attitude and even though she has every right to let this awful disease bring her down, she fights it and even when she is in excruciating pain, she somehow manages to smile. I look up to her and love her so much
I diagnosed with NMO year ago 2/14/13. I understand your fight for independence and I wish they could fix the optic nerve as well. My initial attack I went blind in the right eye. It does get frustrating it moments thanks for your story.
Hi I was diagnosed with NMO when I was 18, I started losing feeling from my waste down, then I lost my left arm. I was almost a year in the hospital until they diagnosed me with Devic's. I started getting better with therapy and treatments but then I relapsed 3 times, every time worse. Right now they are giving me Rituximab treatment, and I've been good for about 3 years now. I regained my strength in legs and the right arm, left one still feels numb. Thank you for sharing it really means a lot
My Niece was just diagnosed......How are you? Did treatment work?
How are you?
Do you still feel some kind of tingling in your leg , as my sister is diagnosed with nmo and had two attacks earlier and after a year she is feeling tingling in leg and some time in hand , is it due to weakness or sign.
@@romakumari5390 How's your sister now
Candace has unfortunately passed away. Please keep her family and friends in your prayers.
P Neum really ? 😥I have NMO it will be 13 years in April
De que murió Candance?
I'm so sorry to hear that. 😭
@@nubiaortega2084 My Sister is Patient of NMO from 2016..It's Attack Every year
18 years old and had nmo at the age of 12, blind from my right eye. lifes hard :(
Hi . I also have NMO I’m 35 everything start when I was 23.
Also blind in my right eye life is really hard with NMO:(
Me too
@@nubiaortega2084 my friend too 😭
Symptoms of attacks of excruciating pain & spasticity lasting from seconds to many minutes were the start of a terrifying journey of six years to a correct diagnosis. I was sent for every test imaginable including 15 MRIs EXCEPT the one blood test that would have diagnosed my disease.. During those six years I was labelled with MS or longitudinal transverse myelitis depending on the MRI reading. In his notes my doctor briefly suspected "Devic's" but never followed up. A simple blood test not ordered but 15 ambiguous MRIs that disrupted my life.
CONT'D: 15 ambiguous MRIs that disrupted my life. One midnight 6.5 years ago, while visiting my daughter out of province, I awoke to go to the bathroom. To my horror, I discovered I was paralyzed shoulders to toes. When I next woke up I was in a hospital bed where the neurologist told me I had NMO. With therapy I was able to restore some function to my upper body but I'm paralyzed from the hips down. Due to the disability, the unremitting pain, and other symptoms, I've remained in a blessed hospital for nearly 7 years. Although I'm sorry that my neurologist and doctors were ineffective, I feel blessed to be in this wonderful hospital & kind, knowledgable staff.
@@brendamagee8123 so forgiving
I found out this morning, so, so sorry to hear. She was an amazing person and will be greatly missed. Just two weeks ago I was going through some old pictures and found one of Candace, myself, and some friends on Grad Night in '96.
Matt Ramsay so she died because of the NMO? I have NMO too I’m really scared 13 years with NMO 😔 not able to walk
omg thank you so much for this video I just got diagnosed so I want to learn all about it
Good luck to you - I have my own degenerative neurological conditions so have a slight understanding of what its like to loose independence as a young woman and being unable to do the athletic things you once were. I hope you can continue to do them for as many years as you want to.
I'll always remember the Silat training with her at the Inosanto Academy. She was really into training and was inspiring. I hope you have found peace Candace.
my heart goes out to you.
R.I.P.
i have nmo. my first acute episode was sept 4th of this year I was starting to lose my vision and having a hard time going to the bathroom, was also getting numbness and tingling in my hands and feet.I had an MRi it showed inflamation of the upper spine and optic nerves. Was treated with i.v. steroids and antibiotics, it brought my vision back, but vision not been the same since initial attack. I'm on all these pills: gabapentin,azathioprine,prednisone,ibuprofen,multivitamin. Doc says it's NMO.
M fighting with same disease sir,,and losing my hope
Hang on
This has been a terrifying past two weeks, my 39 yr old daughter in law was just hospitalized and diagnosed with NMO, 18 days ago.
She is paralyzed from the neck down, my son is with her in hospital pretty much 22 hrs day. I have moved into their house and am looking after my grandkids, ages 12 and 16.
I only discovered the Guthy-Jackson Charitable Foundation last Friday, looking online for support group.
It’s really really scary. I am so glad I found the website, lots to learn ( when I have a second to read) 😰
How is she now? Much love you your daughter and her kids.
@@JG-ix5xr Hi, my daughter-in-law has done remarkably well. She spent 6 months in hospital, then home in a wheelchair. She actually was able to return to her education course, which had been interrupted, and is now in her last year, to be a Social Worker. She was very determined to get out of the wheelchair and learn to walk again, and now, three years later, is able to walk on her own, and do stairs. Pretty much fully functional. She goes twice a year for Rituximab infusions. Still has some back spasms, especially in cold weather. We are very very thankful that she recovered so well, it was a long and very hard process though. She works out a lot, at home now, because of Covid. My grandkids are both fine and thriving, ages 19 and 15 now. Thank you for asking about us!
@@mwbela that is great! Best for her healing and staying strong each day! It isn’t easy
@@mwbela I'm so inspired and very glad knowing the recovery path and hope she gets well completely. My sister is also in the same boat and currently on 5 days steroids after which we plan for Rituximab. Just that the current neurologist advised for IV IG injections. And 11 such injections before Rituximab. Have you come across this term IV IG coz it's not only too expensive around 16k INR per injection but also the side effects.
R I P Pamela Catt
amazing,that happend to me 29th january 2010 was fit & healthy one day then woke up paraysled the day after never had the blindness though,went through the hospitilisation for many months had plasma exch been walking over a year & half now...NMO the unknown disease.....
Hi, I saw your video when I was looking information up on NMO. Almost two weeks ago my daughter lost her eye sight and was in so much pain that we were going back an forth from the ER. They have done an MRI and alot of testing and said that she has NMO. I was hoping to chat with you if possible. My daughter just tuned 18 in july. Hope to hear from you. Joanna
How is she now
My niece was just diagnosed. Help!!! What are we in for?
I guess the lesson is, that if you get blindness in an eye, get thee immediately to a doctor.
Hi i have NMO I have had it since I was four so yeah all my life basically I've been blind I lost my feeling for 3 years then I got it back when I was 8 so that was good ish anyone. Stay strong xxx
How are you feeling now, will you please share your experience with me, as my sister is diagnosed with nmo
My mother also suffer from NMO please guide me what to do
Make sure that she is getting the right treatment. There are several options so find one that works well with your mom's system.
Some of the treatments include rituximab, low dose of steroids daily, and azathioprine.
Does it happen that once you are NMO positive, then after some years of treatment, it can be okay if you come negative?
I diagnosed with nmo in June 2016.......I am 23 years old female from India
It's been 4 year now but still can't understand what's happening with me
Want to know people experience....with nmo
@@poonamjoshi4731 mam my wife is suffering with NMO.... She lost her vision on October 2019 after some treatment she got little vision but when she went for NMO... Got postive. She is really discouraged.... I want to know your experience so that i can strengthen her mentally.. i would like hear you experience if you are willing to..🙏
@@umamahesh4454
I can understand ......
I diagnosed with nmo in 2016....it's bn 5 year now...
I had total 5 attacks in both my eyes
Currently I m stable for the last 2 years and slowly but recovering but vision ......
Initially I was also mentally disturbed but gradually everything started to recover so .....
I m still on treatment
I HV completed my masters in yoga and I feel that yoga has helped me a lot so I advise u to do yoga as well
@@poonamjoshi4731 how's your vision now madam? Do u also have any other symptoms like she is saying in the video?
@@umamahesh4454
Currently My vision is static
Relapsefree for last 2 years
And I HV never had any problem/symptoms other than vision loss....
NMO SPECTRUM DISORDER