NMO Information Day, Vancouver, BC

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NMO Information Day
 , Vancouver, BC, Canada

Registration Link: NMO or call Tel: 604-827-3111

Saturday, November 1, 2014  10:00 AM to 4:00 PM

Djavad Mowafaghian Centre for Brain Health 2215 Wesbrook Mall, Vancouver, BC

We would like to invite you to join us for this FREE event open to patients, family members, friends, caregivers, student/trainees or anyone interested in learning more about NMO. Lunch will be provided (gluten-free and non-gluten-free options). Please register attendance and lunch preference at link provided above.

Learning Outcomes of NMO Day:

-Today‘s NMO overview: Introduction to NMO/Diagnosis and Symptoms/Treatment Options

-New NMO research: What is being done worldwide and here in BC

-Existing advocacy, government, hospital and MS Society resources and support for NMO

-How can you get involved

-UBC NMO Clinic/Research Program: Update and vision for the future

17
Oct 2014
POSTED BY Lelainia Lloyd
DISCUSSION 4 Comments
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4 Comments

  1. Jonna Inman

    I am a mom with a son who has been diagnosed with NMO. He is 19 years old and is having a hard time right now. He started having problems about 2 years ago. He recently spent several days at Vanderbilt Medical Center. He lost his vision in his left eye. Dr Started steroids an his eye began to get some better. it continued to improve as he received the steroids. It is not completely back to normal. He had to life his left leg with both hands to get his foot in his shoe this morning. He is having a very hard time walking. My husband and I are very worried and will travel wherever to get our son the help he needs. Cody has been given most all the drugs that are used to maintain his disease. It doesn’t appear that any of the drugs are helping him. Plex is the number one thing that seems to help. The last round of 5 did not help as much as before. We are now doing 1 PLEX per week. If anyone can give us any advice at all PLEASE do so!! We lost our daughter to a car accident 3 years ago and seeing our son in this condition is horrible.

    Comment by Jonna Inman on October 21, 2014 at 2:11 pm

  2. Lelainia Lloyd

    Hi Jonna,
    I am so sorry Cody is struggling with his health. I would recommend joining the NMO group on Facebook. There is also a group just for parents to get support as well. Just do a search for NMO on Facebook and it will come up. You may also want to get in touch with Guthy-Jackson foundation and see if they can offer any help. I know that they often do consults with doctors when an NMO patient is in medical distress. There are lots of mums on the FB group whom you could connect with. I am glad you were able to connect with us here and I hope that the doctors will find something that works for Cody fast. This is a very scary disease.

    Comment by Lelainia Lloyd on October 26, 2014 at 1:19 pm

  3. Aloha! August 2 i was diagnosed with NMO. I’M 58 and I live in Hawaii on the island of Oahu. I was wondering if anyone knows of a website in Hawaii were other people with NMO can talk or get information! Thanks

    Comment by sean Dorman on October 24, 2014 at 8:21 am

  4. Lelainia Lloyd

    Hi Sean! I would recommend joining the Facebook NMO group (just do a search & it will come up) so you can hopefully connect with those living in Hawaii. I don’t know of a specific Hawaiian NMO website, but many NMO patients connect via Facebook.

    Comment by Lelainia Lloyd on October 26, 2014 at 1:13 pm

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