LETTER TO EDITOR
Year : 2020 | Volume
: 15 | Issue : 6 | Page : 222--224
Sociocultural challenges in patients with myositis and the unmet need for patient support groups: Perspectives from North India
Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India
Dr. Rudrarpan Chatterjee
Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh
|How to cite this article:|
Chatterjee R. Sociocultural challenges in patients with myositis and the unmet need for patient support groups: Perspectives from North India.Indian J Rheumatol 2020;15:222-224
|How to cite this URL:|
Chatterjee R. Sociocultural challenges in patients with myositis and the unmet need for patient support groups: Perspectives from North India. Indian J Rheumatol [serial online] 2020 [cited 2021 Apr 15 ];15:222-224
Available from: https://www.indianjrheumatol.com/text.asp?2020/15/6/222/307134
The unique social construct of our country presents a set of challenges to our patients with myositis that is different from the Western world. Patient support networks and dedicated centers for vocational and social rehabilitation are an oft-ignored unmet need of health-care access in our country. Through their illness, even when the treatment response has been good, patients often find it difficult to re-integrate into a society that is not attuned to the challenges that a person with muscle weakness faces. Disability-friendly bathrooms and ramps accompanying stairs, things that are commonplace in the developed world, have gained traction in the metropolitan cities here, but are yet to penetrate the heart of the country where most of our patients reside. We are grateful to our patients who felt that they could trust us with their stories so that we may present a snippet of the challenges they have faced after a diagnosis of inflammatory myopathy.
Juvenile dermatomyositis with vasculitic skin ulcers and calcinosis cutis spanning 5 years
Aanya was barely 18 months of age when she started developing changes in her skin and muscles. She had been a playful child before, but her parents found her falling down often while walking. Soon, the skin on her face became red and seemed to peel off, recalls her mother, and she developed ulcers on the elbows and knuckles. Within months, their vibrant child had become bedbound. By the time they went through a host of different doctors and referrals to finally reach a specialty rheumatology unit, she was even having difficulty swallowing food and was a shallow of her former self. The diagnosis of juvenile dermatomyositis came as a relief, as they at last knew what ailed their child. Their journey had just begun, as even though the diagnosis was established, Aanya's disease proved difficult to treat. She went through a host of drugs with no great improvement. In the end, exhausting all other alternatives, the doctors settled on intravenous (IV) immunoglobulin injections that seemed to show the best improvement in the child's weakness as well as her skin condition. Finances were an issue, as the IV immunoglobulin that she finally responded to was a costly monthly injection, but at the sight of Aanya walking, they felt it was all worth the sacrifices they had made.
Today, Aanya is 5 years of age. She walks and plays like any child of her age though disfiguring scars from her skin ailment still plague her. As she starts school and socializes with her peers, her parents have faced a new and daunting challenge. Aanya, while refusing to look into a mirror each day, now asks them why she looks different from her friends. Unfortunately, to this innocent and disarming query, they have no answer, for Aanya does not recall or yet understand the life-affirming recovery she has been through. And even worse, they are faced with the truth of their own tiny place in this giant universe when she asks, “Mommy, why did this happen to me?” It is a question her parents are learning to deal with, as they have, with their child's ailment.
Polymyositis refractory to corticosteroids with a success story after 4 months on a ventilator
By the time she was seen at a specialist rheumatology clinic, Riya had already been living with her ailment for 2 years. Despite a fairly early diagnosis, she had struggled with her disease as it had been particularly refractory to drugs. There was an initial glimmer of hope when she did quite well for a year following which her drugs had been tapered. She had been feeling secure in the knowledge of her illness being under control when the weakness relapsed.
Over the course of 4 months, she despaired as the drugs she had responded well to previously (corticosteroids and azathioprine) no longer seemed to work and her weakness kept progressing. One day, she was neither able to get up from the bed, nor swallow liquids, and the very next, she found herself in an intensive care unit (ICU), intubated, and on a mechanical ventilator. She had complete loss of power and could only communicate with the flicker of her index finger with her beloved family. The waking hours in the ICU were the worst, for she could not even convey to her carers when she felt hungry. As days went by, she lost weight and silently struggled, with the tiny meals falling short of her requirement. Her parents had a different anguish that they revealed to the treating physicians, as their financial status made it difficult for them to arrange funds for IV immunoglobulin therapy.
To compound her troubles, she had a reactivation of pulmonary tuberculosis in the given state, after pulses of methylprednisolone and high-dose glucocorticoids with cyclophosphamide. Despite all challenges, her undaunted spirit fought on, and after a prolonged admission of 3 months, she was weaned off ventilatory support, embarking upon a long road to rehabilitation. She has faced a disease course fraught with multiple relapses, including another episode of life-threatening sepsis secondary to a urinary tract infection but has come out of every trial with the same spirit with which she overcame her initial illness.
Mixed connective tissue disorder ostracized by her family for her illness
Yuki had a tough initial bout of illness that required mechanical ventilation. Her family was supportive of her through her illness. Her trials started when she took an independent stand to not conceal her illness from her future in-laws. This has been the toughest part of her journey yet, as she became estranged from her family. She has resumed work and assumed financial independence. However, the lack of emotional and family support through her rehabilitation was particularly challenging. She has grown close to the family she works for and found some solace in their support over the last few years. Indeed, we could not disagree when she said with a heavy heart, “Doctor, I found my emotional family outside the biological family.” The COVID-19 lockdown and the downturn in her financial situation is a new challenge, but she is determined to overcome it with the same verve with which she has faced her illness.
Antisynthetase syndrome, and the story of relapses, social struggles, and an undaunted spirit
Despite the trauma of a chronic disease, Urmi was thankful for the quick diagnosis based on the classic signs and symptoms of disease. She had a good initial response to therapy with improvement in both her muscle weakness and symptoms of arthritis, and was able to resume her vocation as a teacher for a while. One year into the illness, she realized that this disease led to recurrent relapses, testing her patience like simmering water just below the boiling point. Although she has never had a severe or debilitating illness that required hospital admission, the repeated relapses did feel like unwanted interruptions in her daily life. It is difficult to adjust to her job as a teacher which needs to match up the energy of young children when deep inside she feels so drained by her own illness. She has the benefit of a supportive family, but the haunting dread of the next attack of arthritis that may halt all the progress she feels she has made is painful to deal with.
Each of these perspectives from our patients highlights a sense of loneliness that our patients feel, in this painful journey that they are forced to take by themselves after the label of a disease. Families, even when supportive, often do not understand the experiences our patients live through. This is an area where establishing nationwide or even state-wide patient support groups can bridge the gap between diagnosis and acceptance. The acceptance pertains to not only the acceptance of one's diagnosis but also the acceptance of their peers and integration back into a functioning and respected member of the society.
We hope that many such myositis warriors come together to build a strong community such as the Myositis Association (Twitter: @TheMyositisAssc), Cure Juvenile Myositis (Twitter: @curejm), and Cure Inclusion Body Myositis support group (Twitter: @cureibm).,, In addition to providing patients with a platform to connect, these groups also fund clinical research and provide patients with opportunities to volunteer for clinical trials and make empowered choices regarding their disease. The Myositis India patient support group is the first tiny step in that direction.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
I thank Dr. Latika Gupta for ideation of this unique patient perspective article, and our patients for baring out their souls to us.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
|1||Inclusion Body Myositis-Links. Cure IBM. Available from: https://cureibm.org/resources/links/. [Last acessed on 2020 Jul 23].|
|2||Cure JM Foundation. Funding Research to Cure Juvenile Dermatomyositis, Juvenile Polymyositis and other Juvenile Myositis Diseases. Available from: http://www.curejm.org/info/jm. php?id=sponsor. [Last accessed on 2020 Jul 23].|
|3||The Myositis Association. The Myositis Association; 2020. Available from: https://www.myositis.org/. [Last accessed on 2020 Jul 23].|