scholarly journals Facing Loss and Finding Hope in Narrating Together: Accounts of Parenthood Following the Death of a Child to Muscular Dystrophy

2021 ◽  
pp. 105413732110137
Author(s):  
James Randall ◽  
Lizette Nolte ◽  
David Wellsted
Keyword(s):  
Muscular Dystrophy ◽  
Narrative Inquiry ◽  
Muscle Wasting ◽  
Positive Influence ◽  
Narrative Interviews ◽  
Potential Value ◽  
Collaborative Processes ◽  
Bereaved Parents ◽  
Death Of A Child ◽  
Waking Up

Muscular dystrophy is a terminal muscle-wasting condition, whereby families face continuous challenges as their child’s health deteriorates. This research explored accounts of parenthood following bereavement of their child to muscular dystrophy. Narrative inquiry was used to analyse interviews with four couples. Findings suggest an importance in narrating adversities ( waking up to different futures) and positive influence ( creating legacies). The research highlighted how humour is often used to support others to witness painful accounts ( humour through the struggle). Parents appeared to co-regulate the painfulness of narrating loss ( storytelling together). Further research is needed on conjoint narrative interviews and how these may enable participants to address shared loss experiences. Practitioners who support bereaved parents could consider the potential value highlighted in this study of meeting with parents conjointly, which include that, through co-regulatory, collaborative processes, families seemed to be supported to reach narrative cohesion, sensitively and safely, when facing loss and bereavement.

Ayurvedic management of Ducchen’s Muscular Dystrophy - A Case report

2017 ◽  
Vol 2 (4) ◽  
Author(s):  
Jayaraj R. ◽  
Veena G. Rao ◽  
Jyothi Nagalikar
Keyword(s):  
Muscular Dystrophy ◽  
Cardiac Dysfunction ◽  
Muscle Wasting ◽  
Progressive Disease ◽  
Genetic Disorder ◽  
Dystrophin Gene ◽  
Wasting Disease ◽  
Number Of Patients ◽  
Choice Of Treatment ◽  
Muscle Wasting Disease

Ducchen’s muscular dystrophy is most common X-linked recessive disorder affecting 30 in 100,000 live male births. The primary cause of this disease is mutations in Dystrophin gene which is essential for the structural and functional integrity of muscle. It is a progressive muscle wasting disease in which patients frequently develop contractures and lose the ability to walk between 6 and 12 years of age. With progressive disease most patients succumb to death from respiratory failure and cardiac dysfunction in their twenties. As this is a genetic disorder we can consider it as Adibala Pravritta Vyadhi. As Mamsa Kshaya is seen at some muscles and Mamsa Vriddhi at other this is an Avarana Vata Vyadhi. In both Upsthambha and Nirupasthmbha Vatavyadhi, Basthi is considered as prime choice of treatment. A Variety of Ksheerabasti in the form of Kalabasti is studied in this condition by taking subjective and objective parameters. As this has given better improvement with no adverse effects in the patient, it can be tried in large number of patients.

Muscle wasting and carbohydrate homeostasis in Duchenne muscular dystrophy

Neurology ◽  
1978 ◽  
Vol 28 (12) ◽  
pp. 1224-1224 ◽  
Author(s):  
M. W. Haymond ◽  
K. E. Strobel ◽  
D. C. DeVivo
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Muscle Wasting ◽  
Carbohydrate Homeostasis

scholarly journals Parental Grief and Marital Issues Aftermath: A Pilot Study

2016 ◽  
Vol 5 (6) ◽  
pp. 17
Author(s):  
Nur Atikah Mohamed Hussin ◽  
Azlinda Azman
Keyword(s):  
Pilot Study ◽  
Coping Mechanisms ◽  
Mutual Understanding ◽  
Parental Grief ◽  
Limited Knowledge ◽  
Bereaved Parents ◽  
Death Of A Child

<p>The death of a child is difficult to the bereaved parents. Literature had associated the loss with marriage disruption. The issues on that the difficulties to communicate, gender-related coping mechanisms and sexual need were discussed as reasons for bereaved parents to have conflict in their relationship. However there is limited knowledge about this issue. A pilot study has been conducted among six bereaved parents. The bereaved parents were Malaysian Muslim bereaved parents. They were interviewed individually to explore the challenges or conflicts that they had experienced after the death of their child. This study revealed that there were situations which bereaved parents described as having difficulties in their relationship. However, this study also revealed that the mutual understanding and respect to each other are the most of important components for bereaved parents to maintain their relationship post-loss. This study suggested the importance of suggesting couple counselling to bereaved parents after the death of their child.</p>

scholarly journals Cellular and molecular mechanisms underlying muscular dystrophy

2013 ◽  
Vol 201 (4) ◽  
pp. 499-510 ◽  
Author(s):  
Fedik Rahimov ◽  
Louis M. Kunkel
Keyword(s):  
Muscular Dystrophy ◽  
Molecular Mechanisms ◽  
Muscle Wasting ◽  
Neuromuscular Disorders ◽  
Genetic Diseases ◽  
Model Systems ◽  
Cellular Mechanisms ◽  
Gene Encoding ◽  
Progressive Degeneration ◽  
Molecular Pathomechanisms

The muscular dystrophies are a group of heterogeneous genetic diseases characterized by progressive degeneration and weakness of skeletal muscle. Since the discovery of the first muscular dystrophy gene encoding dystrophin, a large number of genes have been identified that are involved in various muscle-wasting and neuromuscular disorders. Human genetic studies complemented by animal model systems have substantially contributed to our understanding of the molecular pathomechanisms underlying muscle degeneration. Moreover, these studies have revealed distinct molecular and cellular mechanisms that link genetic mutations to diverse muscle wasting phenotypes.

scholarly journals The Failed Clinical Story of Myostatin Inhibitors against Duchenne Muscular Dystrophy: Exploring the Biology behind the Battle

Cells ◽  
2020 ◽  
Vol 9 (12) ◽  
pp. 2657
Author(s):  
Emma Rybalka ◽  
Cara Timpani ◽  
Danielle Debruin ◽  
Ryan Bagaric ◽  
Dean Campelj ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Clinical Data ◽  
Muscle Wasting ◽  
Secondary Outcome ◽  
Disease Course ◽  
Biological Mechanisms ◽  
Inhibitor Development ◽  
Myostatin Inhibition ◽  
Deficient Mice

Myostatin inhibition therapy has held much promise for the treatment of muscle wasting disorders. This is particularly true for the fatal myopathy, Duchenne Muscular Dystrophy (DMD). Following on from promising pre-clinical data in dystrophin-deficient mice and dogs, several clinical trials were initiated in DMD patients using different modality myostatin inhibition therapies. All failed to show modification of disease course as dictated by the primary and secondary outcome measures selected: the myostatin inhibition story, thus far, is a failed clinical story. These trials have recently been extensively reviewed and reasons why pre-clinical data collected in animal models have failed to translate into clinical benefit to patients have been purported. However, the biological mechanisms underlying translational failure need to be examined to ensure future myostatin inhibitor development endeavors do not meet with the same fate. Here, we explore the biology which could explain the failed translation of myostatin inhibitors in the treatment of DMD.

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