scholarly journals World Interrupted: An Autoethnographic Exploration into the Rupture of Self and Family Narratives Following the Onset of Chronic Illness and the Death of a Mother

2022 ◽  
Vol 4 (1) ◽  
pp. 131-149
Author(s):  
Caroline Pearce
Keyword(s):  
Multiple Sclerosis ◽  
Chronic Illness ◽  
Narrative Analysis ◽  
Traumatic Events ◽  
Family Identity ◽  
Family Narratives ◽  
The World

Informed by the developments in autoethnography, narrative analysis and biographical sociology this paper seeks to affirm that understanding our narrative enables self-understanding and more importantly enables the understanding of others. Using an autoethnographic approach this paper explores the rupture in self and family identity following two traumatic events: the onset of a chronic illness (Multiple Sclerosis) and the death of a mother. It is the story of the life of my mother, who suffered with MS for 9 years and the story of my sister and myself, who cared for her throughout our childhood up to her death in 2000. The rupture in identity that we suffered interrupted the world in which we lived and exposed the contents of our individual and collective world(s). The themes that emerged from the narratives in this study suggest rupture is experienced as a movement of transgression that leads to movements of regression and progression.

scholarly journals Ethical use of off-label disease-modifying therapies for multiple sclerosis

2021 ◽  
pp. 135245852110302
Author(s):  
Joanna Laurson-Doube ◽  
Nick Rijke ◽  
Anne Helme ◽  
Peer Baneke ◽  
Brenda Banwell ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
World Health ◽  
World Federation ◽  
Off Label ◽  
Disease Modifying Therapies ◽  
The World ◽  
Disease Modifying ◽  
Health Organization

Background: Off-label disease-modifying therapies (DMTs) for multiple sclerosis (MS) are used in at least 89 countries. There is a need for structured and transparent evidence-based guidelines to support clinical decision-making, pharmaceutical policies and reimbursement decisions for off-label DMTs. Objectives/Results: The authors put forward general principles for the ethical use of off-label DMTs for treating MS and a process to assess existing evidence and develop recommendations for their use. Conclusion: The principles and process are endorsed by the World Federation of Neurology (WFN), American Academy of Neurology (AAN), European Academy of Neurology (EAN), Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS), European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), Middle-East North Africa Committee for Treatment and Research in Multiple Sclerosis (MENACTRIMS) and Pan-Asian Committee for Treatment and Research in Multiple Sclerosis (PACTRIMS), and we have regularly consulted with the Brain Health Unit, Mental Health and Substance Use Department at the World Health Organization (WHO).

scholarly journals The internet racing ahead of the scientific evidence: the case of "liberation treatment" for multiple sclerosis

2011 ◽  
Vol 69 (3) ◽  
pp. 525-527 ◽  
Author(s):  
Yára Dadalti Fragoso
Keyword(s):  
Multiple Sclerosis ◽  
Neurological Disease ◽  
Venous Insufficiency ◽  
Scientific Evidence ◽  
The Internet ◽  
Evidence Based ◽  
The World ◽  
Internet Discussion ◽  
The Central Nervous System ◽  
The Subject

Multiple sclerosis (MS) is a chronic neurological disease that typically affects young adults. A recent publication suggested that MS might originate from insufficient blood drainage in certain areas of the central nervous system. The condition was named chronic cerebrospinal venous insufficiency (CCSVI). Other papers have not confirmed these findings and, therefore, the matter remains controversial. Nineteen months after the original publication on CCSVI and MS, another 22 papers have been published addressing the matter. No clinical trials have been carried out on the subject and there is no evidence-based indication to perform surgical vascular procedures in MS patients. However, over the same nineteen-month period, the internet discussion on the subject of CCSVI and MS has led to countless websites advertising treatment using vascular surgery for patients with MS all over the world. The treatment based on the CCSVI theory has appealingly been called "liberation treatment", thus making it difficult to explain to patients why a treatment that has been highly praised (on the internet) cannot be recommended based on partial medical results that await confirmation.

scholarly journals Epidemiological Evidence of the Recent Surge in MS in Asia and Australia: A Systematic Review

2021 ◽  
Vol 25 (2) ◽  
Author(s):  
Sharareh Eskandarieh ◽  
Mohammad Ali Sahraian
Keyword(s):  
Multiple Sclerosis ◽  
New Zealand ◽  
Incidence Rate ◽  
United Arab Emirates ◽  
Literature Search ◽  
Systematic Literature Search ◽  
Epidemiological Evidence ◽  
Male Ratio ◽  
The World ◽  
Lower Incidence Rate

Context: Recently, the incidence and prevalence of multiple sclerosis (MS) have increased drastically in different regions of the world, including Asia. The present study aimed to systematically review the recent MS epidemiology in Asia, New Zealand, and Australia. Methods: A systematic literature search was performed in Medline and Embase databases to retrieve the available studies regarding MS epidemiology in Asia, New Zealand, and Australia. Results: Most of the studies were performed in hospital settings. The female-to-male ratio in the sample populations varied from 1.5:1 in Turkey to 5:1 in Malaysia. The total mean age at the onset of MS varied from the minimum of 28 years in Hong Kong to the maximum of 36 years in the United Arab Emirates. Among 16 pertinent studies in this regard, seven addressed the incidence rate of MS, and 13 addressed the prevalence of the disease. The highest prevalence rate was reported to be respectively 124.2 and 148.06 in Australia and Iran versus 2.73 in Malaysia (06 per 100,000 population), while a higher incidence rate was estimated at 6.88 and 6.7 per 100,000 population in Kuwait and Australia, respectively compared to the lower incidence rate per 100,000 population in China (0.2 in females, 0.12 in males). Conclusions: According to the results, the prevalence of MS has increased in Asia, while the prevalence of MS in this continent is lower compared to the rates reported in Australia, Europe, and North America.

scholarly journals Clinical efficacy and safety of alemtuzumab in postmarketing practice

2019 ◽  
pp. 56-62
Author(s):  
N. V. Khachanova
Keyword(s):  
Multiple Sclerosis ◽  
Adverse Events ◽  
Drug Efficacy ◽  
Safety Monitoring ◽  
Efficacy And Safety ◽  
Serious Adverse Events ◽  
Treatment Benefit ◽  
Dosing Schedule ◽  
The World ◽  
Multiple Sclerosis Treatment

Clinical trials confirm alemtuzumab efficacy for multiple sclerosis treatment in terms of both conventional measures and combined criteria such as NEDA (no evidence of disease activity). However, established drug efficacy and convenient dosing schedule are balanced by the risk of serious adverse events. Therefore, it is necessary to inform physicians about the benefits of alemtuzumab therapy along with the pattern of its safety profile.The present review provides the analysis of alemtuzumab real-world studies in Europe, USA and other parts of the world. The information obtained can help physicians to prescribe and administer the drug properly and to perform effective safety monitoring for early detection of adverse events and saving the maximum treatment benefit for the patient.

scholarly journals World Health Organization Essential Medicines List: Multiple sclerosis disease-modifying therapies application

2020 ◽  
Vol 26 (2) ◽  
pp. 153-158
Author(s):  
Jennifer McDonell ◽  
Kathleen Costello ◽  
Joanna Laurson-Doube ◽  
Nick Rijke ◽  
Gavin Giovannoni ◽  
...  
Keyword(s):  
Public Health ◽  
Multiple Sclerosis ◽  
Essential Medicines ◽  
World Health ◽  
Public Health Burden ◽  
Health Burden ◽  
Disease Modifying Therapies ◽  
The World ◽  
Disease Modifying ◽  
Health Organization

Introduction: The World Health Organization (WHO) publishes a biennial Essential Medicines List (EML) to assist governments in low-resource settings to prioritize their spending on medicines. Currently, no medicines on the EML have a multiple sclerosis (MS) indication. Multiple Sclerosis International Federation (MSIF) prepared an application for inclusion of MS disease-modifying therapies (DMTs) for the 2019 EML together with the regional Committees for Treatment and Research in Multiple Sclerosis (TRIMS) and the World Federation of Neurology. Rationale: The MSIF taskforce categorized 15 DMTs according to their efficacy and risk profiles to ensure the ability to treat as many different clinical scenarios as possible. Three DMTs were selected: glatiramer acetate, fingolimod, and ocrelizumab. Outcome: The WHO Expert Committee did not recommend the addition of any of the DMTs to the EML. They acknowledged the public health burden of MS, the need for effective and affordable MS medications, and the high volume of letters received in support of the application but requested a revised application. Discussion: Despite the negative outcome, the repeated recognition of MS as a global public health burden is sending a powerful message to governments globally that a range of affordable and good quality medications need to be available to health systems and people affected by MS.

Paul Ricoeur’s theory of interpretation adapted as a method for narrative analysis to capture the existential realities expressed in stories from people living with Multiple Sclerosis

2016 ◽  
Vol 16 (5) ◽  
pp. 649-663 ◽  
Author(s):  
Louise Hardwick
Keyword(s):  
Multiple Sclerosis ◽  
Lived Experience ◽  
Social Workers ◽  
Narrative Analysis ◽  
Chronic Conditions ◽  
Meaning Making ◽  
Paul Ricoeur ◽  
Living Well ◽  
The North ◽  
Insight Into

This paper draws on Paul Ricoeur’s theory of interpretation to highlight aspects of the existential realities that emerge woven within the narratives of people living with Multiple Sclerosis (MS). It aims to give social workers and other professionals involved in inter-disciplinary care insight into the meaning-making process and the existential realities interwoven in accounts of lived experience, thereby validating this aspect of experience. To support this approach it also aims to make explicit the method used and interpretation applied to elicit these features. Ten adults with MS from across the North of England were recruited to tell their story related to the onset of, and adjustment to MS. Two of the narratives are presented, and through these, the method used for interpretation derived from the theory of Paul Ricoeur is demonstrated. What emerge, threaded within the events told in a triptych of past, present and future life envisaged, are glimpses of existential realities that evoke universal recognition such as abandonment, loss, acceptance; solidarity, aloneness, suffering and finally calm. The paper concludes that, given chronic conditions like MS often predispose existential deliberation, it is important that these dimensions of lived experience are acknowledged in professional encounters that seek to manage the condition and support people living well with it.

Emotional responses of children and adolescents to parents with multiple sclerosis

2005 ◽  
Vol 11 (4) ◽  
pp. 464-468 ◽  
Author(s):  
Rivka Yahav ◽  
Janine Vosburgh ◽  
Ariel Miller
Keyword(s):  
Multiple Sclerosis ◽  
Chronic Illness ◽  
Children And Adolescents ◽  
Emotional Responses ◽  
Emotional Reactions ◽  
Control Group ◽  
Household Tasks ◽  
Active Protection ◽  
Fear And Anxiety

The effect of a chronic illness of one parent on children is determined by a complicated interaction of various emotional components. Our focus was on the children’s and adolescent’s emotional reactions and feelings towards their multiple sclerosis (MS)-affected parents, including: degree of responsibility, obligation and concern, yielding behaviour and active protection, fear and anxiety related to the state of illness, their sense of burden in connection with household tasks and errands, and anger. Fifty-six children, ages 10=18, each having a parent with MS, were examined. The results were compared to a control group of 156 age-matched children with healthy parents. Feelings were examined by means of a questionnaire previously constructed by us. We found that children of parents with MS felt more responsibility and obligation than children of healthy parents. They also exhibited more yielding behaviour, more fear and anxiety related to states of illness, a greater sense of burden and a greater degree of anger. We consider the interaction between the sex of the parent and the sex of the child in connection with these feelings and discuss the implications of the ‘parental child’ role of these children.

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