My Vision and ultimate Goal
Having suffered from Devics Disease for the past 10 years, I am often humbled by what I see of the lengths NHS staff go to, to make sure their patients get the best possible care. But the truth is we are only at the start of a journey when it comes to Devics Disease care: as a society and a global community we have ignored or failed to recognise the condition for far too long – and unless we get better at recognising, diagnosing and caring for people with Devics Disease we will have failed the million people who will have the condition in England and across the globe by the end of the decade. I have been trying in more ways than one to bring awareness to this rare and often fatal disease known as Devic’s Disease also known as Neuromyelitis Optica (NMO)
My vision began as a fuzzy idea, difficult to articulate and impossible to imagine coming into being. I knew it had everything to do with love, hope and a healing touch, but I wasn’t sure about the cursed “how’s.” But over time, my vision has crystallized, the tribe of people who share my vision is gathering momentum, and I already see it coming true, at least in my mind’s eye and small pockets of the world, if not ubiquitous in present reality.
They say if you can’t dream it, you can’t do it. So this has been the first step – getting clear on the dream.
The vision I have or at least hold in my mind is crystal clear. A subdivision of the health care system that is Helper-patient relationship its the diamond at the heart of a healthcare advisory service that I aim to set up across the globe.
A proud Trisha Alleyne at her Really! book launch. Photo courtesy CaribDirect.com
The patient
The patient in my vision, knows that their body is their business and rather than putting all responsibility into the hands of doctors I believe, they would be willing to accept responsibility for any part they might play in getting better. I am not just referring to whether the patient eats well, exercises, smokes, drinks, or takes his or her medication. I’m talking about whether the patient makes life choices and what those choices may be.
Background
Despite clear advances in research and treatment Devics Disease and Multiple Sclerosis remain chronic inflammatory incurable diseases of the central nervous system. Chronic progressive Devics and MS develops among 30 – 40% of patients within 10 to 15 years after diagnosis, with a significant proportion of patients having to cope with severe physical disability as well as psychological implications. Approximately half of all Devics and MS patients die from Devics and MS itself or related complications, including accidents, severe falls, and suicide, demonstrating a culmination of severe psychological problems; approximately another third die from cardiac and vascular diseases, cancer, infectious and respiratory diseases.
Cases of Devics Disease (MNO) have been reported in all continents and races across the globe, and has found to be more prevalent in areas with Black, Asian and Indian populations, where the presence of MS is usually low. In Africa and Asia classical MS is quite rare, but in Nigeria Osuntokun, there has been reported 95 cases of difficult disease among 97 cases of MS.. In South Africa, the re-occurring-relapsing form of Devics Disease was observed in seven of eight Black patients. In two recent studies carried out in Japan, quoted by Kira revealed a prevalence rate of 8 – 9/10 a far higher figure than those revealed by earlier epidemiological studies of this region. The study in Okinaka found that out of 270 cases of demyelinating disease, collected in Japan, there were 175 cases of Devics Disease and 66 cases of conventional MS.
Within the Caribbean basin the relative frequency of Devics Disease has been studied to no great extent. One study was carried out using the Wingerchuk and others, original diagnostic criteria. Cabre and others in African descent populations it found 13 cases (17.3%) of relapsing Devics Disease among 75 cases of MS sufferers. Similarly 28 (93%) of 35 French-Afro-Caribbeans in Martinique with Devics were women. In the paediatric group female to men ratio was 3.2:1 where as in patients of African origin, optic neuritis is more frequently the presenting symptom of the disease.
The predictive factors for poor outcomes include presence of other autoimmune disorders, a high frequency of attacks during the first two years of the disease and poor motor recovery following the index event, which leads to a prognosis that is still worse in patients of African/Caribbean origin than Caucasian patients. In the few Afro-Caribbean studies 63% of the patients had EDSS score > 6 at the final examination, and 33% died after a mean time of 8.7 years.
So what is 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.
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.
High Commissioner (ag) Mr Donville Johnson endorses Trisha’s Book launch and campaign. Photo courtesy CaribDirect.com
The After-care
Presently however Devics and MS Patients do not routinely come into contact with the palliative care approach (This is an appropriate approach for patients suffering at different stages of disease, this includes those undergoing treatment for curable diseases and illnesses and those living with chronic diseases as well as patients nearing the end of their life. Palliative medicine utilises a multidisciplinary approach to patient care, it relies upon the input from physicians, nurses, chaplains, social workers, psychologists and other allied healthcare professionals in which to formulate a plan of care to relieve suffering in all areas of a patient’s life. This multidisciplinary approach allows the power motive care team to address physical, emotional, spiritual, and social concerns that arise with advanced illnesses).
Within the Palliative care package would contain managing the emotional and day-to-day impact of Devics Disease.
When I was initially diagnosed back in 2004 I had been working as a senior housing officer for a local housing association, it was a really interesting adjustment for me after going through a lengthy process of getting diagnosed, as I’m sure many sufferers can identify with. I finally did get the confirmed diagnosis of Devics Disease / MS.
I spent the first year just trying to come to terms with the fact that I had Devics Disease. I knew very little about the condition, in fact I knew nothing, never had I heard of it before, until it was mentioned that Devics Disease could possibly be a rare variant of Multiple Sclerosis (MS).
I realised that there was, a need for people who were dealing with chronic illness to get support around the emotional aspects of it. I knew that if I was having that much difficulty with acceptance and dealing with fear and dealing with depression and many of the other emotional reactions to the disease that other people were probably struggling with those issues as well.
Once I launched book two titled ‘REALLY!’ it had such a wonderful response, I found that it’s something that has met a need. The information contained from the psychological implications of dealing with this disease to sexual health issues, has really helped not only the patient, but the family members and caregivers as well to learn a little bit more about what it’s like to live with this disease on a day to day basis. Not just physically, but the emotional part as well. It takes into account, things such as is the patient lonely? Depressed? Anxious? Pessimistic? Overworked? Financially struggling? Or even spiritually bankrupt?
At least 90% of the time illness results from an imbalance in what is in essence your thoughts, feelings and beliefs. If illness is either caused or exacerbated by an unhealthy mind, this means you can assist in healing your body by healing your mind but doctors cannot do this part for you. Your doctor or other healthcare provider can certainly hold your hand, while also prescribing drugs or performing surgery or offering other medical treatments.
A proud Trisha Alleyne with her sons at her Really! book launch. Photo courtesy CaribDirect.com
My Vision/ Goal
To raise awareness of Devics Disease . There are many projects I feel I can embark upon…Such as:
To do a petition: the signing of this petition is to create legislation/the start of the legislation process that will see December as the declared National awareness month for Devics Disease.
Although many people who have Devic’s Disease suffer and some die, I believe we have to make this condition a news worthy issue. Research shows 80-90% of people who have Devics Disease are women, and of African or Black Caribbean descent. It is a disease that attacks men and children as well.
My goal is to bring awareness to this disease to every person, every Doctor every medical facility and make it a part of every medical school’s curriculum.
Social media injection: I ask that you join me in our endeavour to spread the word about this disease. Tell someone, tell everyone you know.
My long term goal is to open Day Units (centres globally) using Palliative care. Encompassing advice to enable patients and their families to receive specific care and support from a multi-disciplinary team. Specialising in working with people with chronic illness namely Devics Disease and MS.
The aim of Your Inspiration social enterprise is to assess each patient when they first attend the Day Unit this will allow us to introduce the centre and its services, discuss concerns, ask questions, identify needs and decide what support is needed. A plan of care will then be agreed based on the patient’s needs and not their diagnosis and includes elements relating to their physical, psychological, emotional and spiritual needs as stated before.
The concept is designed to bring the palliative care approach to anyone with Devics Disease or MS, it must be taken into consideration the attitudes of both patients and associated health professionals. I believe palliative care will help the majority of these patients in the day to day management of their condition. Some people need extra care or support be it practical or emotional in order to lead an active life and do the everyday things that many non-sufferers take for granted, which would enable the sufferer to retain their independence and dignity.
Through the centre people will come in for counselling, where they would have access to a lot of information that is out there to read, gather and to share with family members regarding the physical impact of the disease. But currently there are very little resources available that really addresses the emotional aspects. That’s what basically prompted me to write the books. I just felt like there was a real need out there., I think both of my books sort of found a niche where there really wasn’t much information out there.
The Research
Your Inspiration Charitable Foundation will be established to fund biomedical research in the search to understand the pathophysiology and biochemistry of Devics Disease (NMO) with the ultimate goal of discovering a cure.
Conclusion
Severely affected Devics and MS patients alongside health professionals, may well have a vague and incomplete perception of palliative care, which may lead to the miss-understanding, discomfort, or even rejection. A consistent palliative care concept with a view towards early integration would be introduced and made public within the Devics and MS Communities, also among the general health providers so to offer a combined approach, seen as an additional layer of support for severely affected patients in the future. Your Inspiration will work across international boundaries to improve treatments and develop drugs that will help transform the lives of people with Devics Disease, their families and carers. I believe if Your Inspiration (social enterprise) is to lead the way internationally we need to transform the way we do things here at home – by promoting the dignity, care and compassion, help and support that we are determined to give to all people with Devics Disease. The NHS helps people to live better for longer, we at Your Inspiration intend to lead, shape and fund healthcare on a global scale, ensuring that people have the support, care and treatment they need with the compassion, respect and dignity they deserve. We are dedicated to bringing awareness of Devics Disease this rare and often fatal disease.
