SistaMoon Foundation For Devic's Disease - Bringing Awareness to Devic's Disease
NEUROMYELITIS OPTICA/DEVIC'S DISEASE AND MULTIPLE SCLEROSIS
 
In my research of Devic’s Disease/NMO, I have requested information regarding Devic’s disease from various Doctors, Researchers,and Teaching Universities. So far I have received feedback from Dr. Kermode from Western Australia. And Dr. Wingerchuk from The Mayo Clinic, United States.
 
Dr. Kermode’s insight and research in the area of MS and NMO is fascinating and very informative. I am more than grateful that Dr. Kermode took the time from his day to not only answer my questions but to also share his knowledge with me. I must say I am very impressed and better informed thanks him.
 
At the time I was requesting information regarding Devic's Disease,I was also very concerned with healthcare issues (I still am) in the Untied States.There was huge debate among my peers and others diagnosed with rare diseases with respect to what kind of healthcare reform we needed if any. I decided I would read the proposed plan (HR 3200) and share my findings with my friends and individuals with various medical problems.
 
This is the question I asked Dr. Allan G. Kermode, via an email, regarding Devic’s Disease/NMO
 
I would like to know what kind of studies are being conducted at the University of Western Australia and how this disease is affecting individuals diagnosed, mis-diagnosed with this disease and what kind of healthcare issues they may have.
 
This is his response via email:
In Australia they have a nationally funded health care system, with universal coverage. Everyone in that country has access to insurance. The employed, the unemployed and those who have never been employed have access to healthcare insurance.“if one is unlucky enough to fall ill (and no-one ever wants to fall ill, or falls ill by deliberate choice), then the health system and the government will protect you, care for you, and pay your bills”.
 
The Hospitals in Western Australia are modern, well funded, and the skills of their Doctors are extremely high and international. For example, Dr. Allan Kermode has worked and studied for many years in Oxford and London (Great Britain), Heidelberg (Germany), and spent one year at NIH (Bethesda Maryland, Washington DC), and he is qualified (“Board Certified”) to work in many countries. He chooses to live in Australia.
 
Perth WA, Australia is a medium sized city with roughly 1 million people and they are “relatively wealthy” with a “strong economy”. However, it is remote (3000) mile away from Sydney Australia.  They are “actively engaged in many areas of research”.Dr. Kermode has worked with Nobel Prize winners Professor Barry Marshall and Dr Robin Warren, who were named as the 2005 Nobel Laureates in Physiology or Medicine for their groundbreaking research at Royal Perth Hospital between 1979 and 1984.
 
While seeking information on the subject of Devic's Disease/NMO, I have found that there are various researchers whose perspective on NMO differs from the Mayo Clinic's perspective. However, as Dr. Kermode believes "much more work needs to be done on NMO and its’ variants, as well as in MS". In order to determine whether NMO is "completely independent of MS". From the information I have been able to obtain thus far, NMO can be considered to be an extreme form of MS or at the very least closely related to MS.
 
According to Dr. Kermode, “Our MS group is rather small and we think critically, work hard, independently, objectively, and cooperate internationally. Our perspective on MS and NMO differs considerably from the Mayo viewpoint at present, but the area is evolving rapidly and we only seek the truth. I believe much more work needs to be done on NMO and its’ variants, as well as in MS. I am not convinced that NMO is completely independent of MS, rather I believe it can be considered to be an extreme form of MS or at the very least closely related to MS. To some extent this distinction or not is a matter of classification and semantics, but I think that one must always be guided by evidence and not opinion. Importantly we need to know the implications for current therapy, and ultimately we all hope for cures. The NMO phenotype is not common in my part of the world, but I am actively involved in research in China and Japan where optic and spinal disease tends to be more severe. I am a founding member of the Pan Asian Committee for Treatment and Research in MS (PACTRIMS), and I am on the executive and scientific committee. You may be interested to learn that NMO and optic-spinal forms of MS is one of the major “hot topics” in Asia, and the pharmaceutical industry has also become very active in this area”.
 
Let me say again, Dr. Kermode nor his colleagues are alone when it comes to having a different perspective on MS and NMO.
There are various studies that have been and continue to be conducted with conclusions that leads me to believe that NMO
could very well be a severe form of MS. 
 
For references on studies and research being conducted regarding NMO and MS, please go to the Recommended reading section.
 
Dr. Kermode has an extensive publication history including several publications on different subjects that deal with MS. He along with his colleagues have a number of manuscripts currently in press and in preparation, with  an example of a collaborative study Dr. Kermode performed in Beijing.
 
Dr. Kermode
Prof. AG Kermode MBBS MD FRACP FRCP
Centre for Neuromuscular and Neurological Disorders
Australian Neuromuscular Research Institute
Level 4, A-Block, M518
Sir Charles Gairdner Hospital
Perth WA 6009
Australia
 
Here are a few Publications/Papers/Manuscripts Dr. Kermode has been involved with regarding MS/NMO
 
1. Genome-wide association study identifies new multiple sclerosis susceptibility loci on chromosomes 12 and 20
The Australia and New Zealand Multiple Sclerosis Genetics Consortium (ANZgene)
Published in Nature Genetics
 
2. Characterization of the spectrum of demyelinating disease in Western Australia
J. Neurol. Neurosurg. Psychiatry 2008;79;1022-1026; originally published online
J-S Wu, M-N Zhang, W M Carroll and A G Kermode
Published by Journal of Neurology, Neurosurgery, and Psychiatry
 
3. Clinical Study
Etiological profile of presumptive optic neuritis in China
Xiaojun Zhang a,*, Wei Wang a, Wenbin Wei b, Qian Wang a,
Yongxiang Wei c, Allan G. Kermode
Published by Journal of Clinical Neuroscience
 
4. Proposed modifications to the McDonald criteria for use in Asia
Mult Scler 2009; 15; 887
HT Chong, J Kira, CP Tsai, B Ong, PCK Li, A Kermode and CT Tan
DOI: 10.1177/1352458509104587
Published by:SAGE
 
5.Longitudinally Extensive Myelopathy in Caucasians A West Australian Study of 26 cases from the Perth Demyelinating Diseases
Database
Carroll, Frank L Mastaglia and Allan G Kermode
Wei Qiu, Jingshan S Wu, Mei-Ni Zhang, Takuya Matsushita, Jun-ichi Kira, William M
jnnp.bmj.com
published online 25 Aug 2009;
6. The role of anti-aquaporin-4 antibody in Asian patients with multiple sclerosis: Confusions and
controversies
Neurology Asia 2007; 12 : 135 – 139
VIEWS AND REVIEW
HT Chong, *AG Kermode, CT Tan
Department of Medicine, University of Malaya, Kuala Lumpur, Malaysia; *Australian Neuromuscular
Research Institute, Sir Charles Gairdner Hospital, Western Australia, Australia
 
7.Central motor drive and perception of effort during fatigue in multiple sclerosis
Gary W. Thickbroom
Paul Sacco
Allan G. Kermode
Sarah A. Archer
Michelle L. Byrnes
Andrew Guilfoyle
Frank L. Mastaglia
Published by J Neurol (2006) 253 : 1048–1053
DOI 10.1007/s00415-006-0159-2
8. Low sensitivity of anti-aquaporin-4 antibody in multiple sclerosis, longitudinally extensive spinal cord lesions and
neuromyelitis optica in Australians
Jing-Shan WU, *Takuya MATSUSHITA, William M CARROLL, *Jun-ichi KIRA,
Frank L MASTAGLIA, Allan G KERMODE
Australian Neuromuscular Research Institute, Sir Charles Gairdner Hospital, Western Australia,
Australia; *Department of Neurology, Neurological Institute, Graduate School of Medical Science,
Kyushu University, Japan
Neurology Asia 2007; 12 : 149 – 150
 
9. Enhanced corticomotor excitability with dynamic fatiguing exercise of the lower limb in multiple sclerosis
Gary W. Thickbroom
Paul Sacco
Deborah L. Faulkner
Allan G. Kermode
Frank L. Mastaglia
Neurol (2008) 255:1001–1005
DOI 10.1007/s00415-008-0818-6
 
With Dr. Kermode's permission, I have included various sites to visit
 
Australian Neuromuscular Research Institute
 
Sir Charles Gairdner Hospital
 
Royal Perth Hospital
 
University of Western Australia
 
Pan Asian Committee for Treatment and Research in MS
 
I thank Dr. Kermode for his dedication to the Medical Field and Research. It was a real pleasure receiving his email.
 
Keep in mind I am NOT a Doctor or a Researcher. However, I am someone who wants to learn everything there is to know about this disease. I want to know why some researchers believe this disease is an extreme form of MS or at best it shares similar characteristics with Japan's Optic-Spinal Multiple Sclerosis (OSMS). I want to know what difference it makes if it is or not.
 
I have the desire to make Devic's Disease/NMO as well known as MS and other rare diseases. I will continue to bring awareness to Devic’s Disease.  I will raise money for research, education and I will raise money to help support individuals who are diagnosed and affected due to Devic's Disease.
I welcome the day when every Doctor, Researcher involved with researching Devic’s Disease/NMO comes together and share their
findings and work together to find a cure or at least more effective ways to treat Devic’s Disease/NMO. I will continue to reach out to Doctors and Researchers (for Devic’s Disease/NMO/MS) to stay abreast/updated with respect this disease. 
 
For more information on Noble Prize WinnersProfessor Barry Marshall and Dr Robin Warren please go to
 
DISCLAIMER:
 Please make sure to check with your Doctor, Neurologist before making any medical decision.
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