Dear Visitor, As the lead for the national NMO service in the UK, I am delighted at the launch of a charity for patients with NMO, and for choosing to support our research. Neuromyelitis Optica is a serious disabling condition affecting the nervous system, particularly the optic nerves and the spinal cord. The most seriously-affected persons can be paralysed in all four limbs and may lose sight in both eyes. Thankfully it still remains a relatively rare condition compared to Multiple Sclerosis, but the distinction is important as it is a much more severe illness and its treatment is markedly different. A treatment based on a wrong diagnosis can lead to serious consequences.
New treatments are on the horizon and older treatments and treatment strategies are being redefined. But we desperately need to raise awareness of this devastating disease; we need better diagnostic tests and treatments during an attack, effective treatments that would prevent further episodes, and hopefully a cure.
The UK service for Neuromyelitis Optica in the UK is based currently at two centres: in Liverpool (Walton Centre) and Oxford (John Radcliffe Hospital). The researchers in the UK have published several landmark studies that have shaped the way Neuromyelitis Optica is diagnosed and treated worldwide.
Though the number of patients has been rising worldwide, there are very few dedicated charities. Without continuing financial support our research and training will dwindle and the momentum gathered over the last few years falter. At a time when Governmental funding for scientific research for rare disorders is hard to come by, charities such as this are a godsend. I would therefore appeal to everyone to contribute generously.
Dr. Anu Jacob MD, DM, FRCP
The Walton NHS Trust,
Welcome to NMO-UK, It has long been my dream to establish, with the help of sufferers and family members like myself, a charity that will both support sufferers and raise awareness of NMOSD (Neuromyelitis Optica Spectrum Disorder), formerly known as NMO. Well here we are, finally. I say finally but this is just the beginning of a journey where we hope every person who suffers in any way due to this, at present, incurable disease, will join us in our efforts to raise support for the grant procedure (as detailed in the online support, grant application section of the website). Although we have reached this stage without any additional funding, we now need to turn to the business community and work in partnership with those who are kind enough to support with their advertising on this site and in future publications. Without the support on a national or county basis none of this would be possible.
Please take the time to tour our site as a sufferer, supporter or family member. Assist us to do what needs to be done in the ongoing fight against this terrible disease.
- No tears for Tia - she’s fighting back!
- Occasionally we come across a story that tugs at the heart strings, stirs the emotions, and the grips us through the despair, the hope and the longing for a happy ending.
- Our lead article for the first edition of the magazine does all of this. We join Tia-Grace and her mother Sandy’s emotional rollercoaster, full of fear, confusion, despair and an unyielding hope for a happy ending where the smiles defeat the pain.