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Home African Caribbean Barbados: The challenge of living with Devics Disease

Caribbean news. On Saturday 24th May 2014 a demonstration of courage, perseverance and determination to help one’s fellow man was witnessed by many special guests at the Barbados High Commission.

It was the official launch of the book Really!, the second in a trilogy begun by author and Multiple Sclerosis (MS) sufferer, Trisha Alleyne in March 2013 when she launched her first book, Is This Really You.

Really Book Launch

A proud Trisha Alleyne at the signing

Trisha who is partially sighted suffers from the debilitating and highly evasive Devics Disease.

Neuromyelitis optica Devics Disease (NMO) is an uncommon  (rare) disease of the central nervous system (CNS) that affects the optic nerves and spinal cord. Like MS, Devics leads to loss of myelin and can cause attacks of optic neuritis and myelitis (inflammation of the spinal cord.) Originally known as Devic’s Disease, NMO is often misdiagnosed as Multiple Sclerosis and until recently, NMO was thought to be a severe variant of MS. Recent discoveries indicate that Devics disease (NMO) and MS are distinct diseases.

Devics is different from MS in the severity of its attacks and its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. Symptoms outside of the optic nerves and spinal cord are rare, although certain symptoms, including uncontrollable vomiting and hiccups, are now recognised as relatively specific symptoms of  Devics (NMO) that are due to brainstem involvement.

Really Book Launch

Trisha autographing a copy of Really! for Acting HC Donville Johnson

The recent discovery of an antibody in the blood of individuals with Devics (NMO) gives doctors a reliable biomarker to distinguish Devics from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with Devics (NMO) and is not found in people with MS or other similar conditions.

Trisha who can be found clad in garments with large amounts of red, the only colour she can recognise, was supported at the book launch by her family including devoted husband Anderson, her daughter Isharna and two sons. Family friend and marketing executive of the project, Judith Fonseka ensured all the arrangements came together to deliver the fantastic and inspiring evening experienced by all.

Presiding over the evenings activities was Acting High Commissioner H.E Donville Johnson who expressed his gratitude for being asked to host the event. High Commissioner Johnson pledged his support for what he describes as a truly inspiring story and serious issue for vulnerable women of the Caribbean.

Also in attendance and incidentally in Britain was the Honourable John Boyce, Minister of Health for Barbados who was in London on his way back to Barbados from Geneva, also lent weight to the High Commissioner’s support to facilitate the education and awareness of Devics Disease to health service personnel of Barbados.

Really Book Launch

Acting High Commissioner Donville Johnson and the Honourable John Boyce, Minister of Health for Barbados

The event was blessed by family friend and long time supporter Lincoln Ramus who thanked God for Trisha’s vision and strength of character and asked that she be granted the fortitude to continue spreading the word to the unsuspected women who could become afflicted with Devics Disease.

An important feature of the evening’s book signing was a select reading from the new book’ REALLY! performed by long-time friend, university colleague, production manager and true supporter Colin Shim-Hue. There was also a special message from The MS Society read by Judith Fonseka and a special message from guest speaker Denise Charles-Jokhan.

From all accounts the signing was a tremendous success as many were inspired by the readings and Trisha’s personal accounts of her suffering and challenges with the disease. Many were also amazed at the fact that Devics disease, a silent killer is still after more than ten years relatively unknown to the global scientific community. It is clear from the outcome of the signing and pledges of support that the book Really! will do well in the market and Trisha’s intended campaign to educate the Caribbean will garner much community and political support.

There will be another opportunity to meet the author Trisha Alleyne at the second signing of the book REALLY! at the Dominica High Commission, 1 Collingham Gardens, London SW5 0HW on Thursday 10th July between 6-9pm. Tickets are available by way of a £5.00 compulsory donation to the charity.

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