CHILDREN WITH DISABILITY: Multiple Sclerosis

1. What is Multiple Sclerosis?

Multiple sclerosis (MS) is a chronic disease that affects the central nervous system, especially the brain, spinal cord, and optic nerves. This can lead to a wide range of symptoms throughout the body. (WHO)

It most often appears when people are between 20 to 40 years old. However, it can also affect children and older people.

Clinically isolated syndrome (CIS)

CIS refers to a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of myelin that covers the nerve cells) in the central nervous system (CNS).

Relapsing-remitting MS (RRMS)

This is the most common type of MS. The first sign of this disease will typically appear before the age of 30 years. The person experiences attacks of new or worsening symptoms. Their symptoms improve or even disappear for an extended period until next relapse.

Primary progressive MS (PPMS)

This is a less common MS which mostly occurs after the age of 40year . They may not have attacks or a sudden onset of symptoms, but they tend to experience symptoms throughout their life without recovery or remission.

In the rare cases, when the condition progresses to become advanced or reach the end stage, more severe symptoms occur. Muscle weakness can lead to a loss of mobility, and the person may start to have serious cognitive problems. A person with advanced or end-stage MS may lose their physical independence and require continuous care.

2. Identify the problem

In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. This leads to a permanent damage or deterioration of the nerves. Multiple sclerosis signs and symptoms may differ greatly from person to person and over the course of the disease depending on the location of affected nerve fibers.

Whereas in children , the signs are different. The first signs of the disease are different for children. It might start after a child has a nerve disorder called acute disseminated encephalomyelitis (ADEM). Most of the time, the symptoms of ADEM include headache, confusion, coma, seizures, stiff neck, fever, and major lack of energy. But some children will keep having problems that are the same as MS.

Multiple sclerosis may get worse more slowly in children than in adults. But people who had the condition in childhood or adolescence can have physical disability at an earlier age. The disease also may cause greater challenges with thinking and emotions for children and teens, and may affect their schoolwork, self-image, and relationships with peers.

Symptoms often includes

Fatigue (most common), headache, back pain.
Vision problems
Muscle stiffness (spasticity)
Muscle weakness
bladder/ bowel problems
Sexual problems
Sensory problems (numbness, tingling, pain)
Emotional changes
speech/ swallowing difficulties
Cognitive changes (attention, memory, processing)
Walking difficulties (weakness, imbalance, incoordination)

3. Prevalence

The crude prevalence rate varied from 967-4,070 per 100000 population with an average of 2394 per 100000 population. Based on this data it is estimated that for the current population of 1.27 billion, approximately 30 million people suffer from neurological disorders in India.

The overall prevalence of epilepsy ranges from 2.7 to 41 per 1000 population, though in the majority of reports the rate of active epilepsy (i.e. at least one seizure in the preceding fi ve years) is in the range 4–8 per 1000 (5, 10). The prevalence of active epilepsy is generally lower in industrialized countries than in developing countries, which may refl ect a lower prevalence of selected risk factors (mostly infections and traumas), a more stringent case verifi cation, and the exclusion of provoked and unprovoked isolated seizures.

4. Institutional challenges

Medical
Lack of an early diagnosis of MS due to these overlapping or misleading conditions is coupled with a lack of an early intervention, i.e., even if the patients with MS reach neurologists, it is not certain that treatment will be initiated. Chronic diseases such as MS require continuous treatment. A discerned lack of efficacy, financial constraints, distress, and curiosity of the patient to adopt other available therapies might also lead to a poor treatment adherence
Educational
The above mentioned individual challenges hinders the educational aspect and peer building at schools. It sometimes gets difficult for the children to cope up with the education pace. Since cognitive ability of children are affected.

5. Individual Challenges

Mood disorders occur frequently in children with MS. Depression is the most common, occurring in about 27 percent of children with MS. Other frequent conditions include: anxiety,panic disorder, bipolar depression, adjustment disorder. Apart from this, approximately 30 percent of children with MS have cognitive impairment or trouble with their thinking. The most frequently affected activities include memory, attention span, speed and coordination performing tasks, information processing, executive functions like planning, organizing, and decision-making.

6. Diagnosis and Treatment

Treatment
There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms. Following are the treatments that can help control the condition. Like,
On the basis, of Patient’s history
Patient’s neurologic symptoms, and
MRI
Spinal tap: It is also known as Lumbar puncture. This test can be done in hospitals or clinic settings where a small sample of the cerebrospinal fluid (CSF), liquid that acts as a cushion, protecting the brain and the spinal cord. is collected, using a thin needle, which is inserted between two lower lumbar (lower back). Taken sample that shows abnormal results in protein and inflammatory cells may indicate MS.
Electrical test: This test measures the electrical activity of the brain in response to hearing, sound or sight stimulus. These tests can detect the speed of the impulse that passes through the nerves and are sensitive enough to detect lesions even before they show up on neurological exams or symptoms become obvious.

7. Rehabilitation

The following stakeholders play a major role in rehabilitation.

Neurologist: diagnosis the conditions affecting the brain and nervous system.

Physiotherapist: helpful in promoting activity and exercises for people with MS to hlp in resume, or maintain, an active and independent life. It can be valuable for many MS symptoms and is particularly useful for managing stiffness, balance, spasticity and spasms.

Occupational therapist: 'whole-person' approach to mental and physical health and well being, and regard 'occupation' as meaning daily self-care, working life and leisure activities.

Continence advisor: help with bladder and bowel symptoms. Depending on the nature of symptoms (exercises to improve bladder or bowel control, support with medication, products such as pads or catheters.)

Speech and language therapists- They can help people with MS in the management of communication or swallowing problems. for instance:

slurring or slowing of speech - most common form of speech problem
difficulty in remembering words or concentrating on things involving words. Eg. reading a long newspaper article.
swallowing problems and coughing or choking whilst drinking. The speech and language therapist may carry out a swallowing assessment and advise ways to minimise or avoid problems.

Clinical psychologist or clinical neuropsychologist- Who can help with the impact that MS may have on cognition (thought processes, memory, concentration), thoughts, mood and behaviour.

It aimed at maintaining or improving the function and quality of life of person with MS. Variety of physical, psychological or social complications came due to MS, but with the help of rehabilitation specialists, they are able to live their life as fully as possible.

There are no such policies and schemes specifically for the person with MS. But, there are some for them as a general for people with disabilities, about which a social worker needs to Aware them regarding their benefits and compensation programs and policy.

Multiple Sclerosis Society of India (MSSI)

Ensuring that people affected with Multiple Sclerosis (MS) can continue to live life to the fullest as they strive they offer support and programs to enhance the quality of Life.

8. Our Role

Micro-level

Engagement with the patient and family.
Needs assessment, including identifying strengths and limitations in the patient and their environment.
Providing encouragement to the patient and family through individual and family counseling.
Psycho-education – Educating the family and the patient on the side-effects of treatment and how to manage them.
Mobilizing resources based on needs and key concern areas.
Providing awareness about thalassemia and other blood disorders.

Mezzo

Sensitizing the community on blood disorder and de-stigmatizing them.
Providing general awareness about MS, their causes and symptoms, appropriate treatments, and sharing resources for the same, in terms of referrals.
Collaborating and networking with other people and organizations working towards awareness about MS.
Creating a support group for MS patients.

Macro

Working with stakeholders to change policy and create new policies
Creating awareness about MS on a macro level, making early intervention a greater possibility, especially for the low-income group.
Creating job opportunities forMSand blood-related disorder patients which are appropriately challenging but also accommodating of the disability.

9. References

Causes and Risk Factors of Multiple Sclerosis. (2019). Retrieved 3 March 2020, from https://www.verywellhealth.com/multiple-sclerosis-causes-and-risk-factors-2440716
Health professionals involved in the management of MS. (2019). Retrieved 25 February 2020, from https://www.mstrust.org.uk/a-z/health-professionals-involved-management-ms
Johnson, J. (2019). Multiple sclerosis stages: Symptoms and timeline. Retrieved 25 February 2020, from https://www.medicalnewstoday.com/articles/324328
Lancastre, J. (2017). Spinal Tap Test and Multiple Sclerosis Diagnosis. [online] Multiple Sclerosis News Today. Available at: https://multiplesclerosisnewstoday.com/multiple-sclerosis-diagnosis/spinal-tap/
MS Tru\st. (2019). Neurologist. [online] Available at: https://www.mstrust.org.uk/a-z/neurologist

10. Bibliography

Shaji KS et al. Caregivers of patients with Alzheimer’s disease: a qualitative study from the Indian Dementia Research Network. International Journal of Geriatric Psychiatry, (2002).
Fisher RS et al. Epileptic seizures and epilepsy. Definitions proposed by the International League against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia, (2005).
WHO, Neurological disorders : public health challenges.