Today, AS affects one in every 100 young adults in India.
Ankylosing Spondylitis is a disease that at least half of India’s population may not have heard of, a chronic inflammatory disease that primarily affects the spine and sacroiliac joints.
Owing to the lack of awareness around this disease, many people with the condition feel like no one understands what they are going through.
Dealing with unpredictable symptoms like joint pain and stiffness can make you feel alone or isolated from friends and family, also impacting a patient’s lifestyle and mental health.
Therefore, it becomes crucial to have a support system in place as it can be a lifesaver especially when you learn you really are not alone in managing this life-long condition.
''Support groups can be a huge relief to patients suffering from Ankylosing Spondylitis."Dr Ramesh Jois, Consultant Rheumatologist, Manipal Hospital, Bangalore
Support groups help by sharing information and experiences from patients who have suffered the auto-immune condition in the past.
In addition, by providing disease-related information, they enable patients to interact with each other and learn important aspects of disease, treatment, recent advances in treatment, etc.
For many people, a health-related support group may fill a gap between medical treatment and the need for emotional support.
A person's relationship with a doctor or other medical personnel may not provide adequate emotional support, and a person's family and friends may not understand the impact of a disease or treatment.
The Need to Raise Awareness
Nearly 40 percent of AS patients end-up with spinal fusion, loss of spinal movements, and spinal deformity; and this happens due to inadequate treatment in the early stages.
AS can lead to permanent joint damage if left untreated. Unfortunately, in India, 69 percent patients are either misdiagnosed or remain unaware of Ankylosing Spondylitis, which further worsens their condition.
AS particularly has severe psychological effects as most patients are young adults under 40. They spend the prime of their lives having difficulties in getting basic work done instead of living life to the fullest.
Coping With the Psychological Burdens
Depression or developing an anxiety disorder is a concern in AS patients and it is wise to seek support from friends and family and consider professional help at the earliest.
Psychologists, counselors, and support groups are few options from where one can seek therapy and obtain vital information related to the disease. A rheumatologist can give you the best treatment, but poor mental health can make that treatment ineffective and further worsen one’s condition.
An AS support group makes it easy for patients to manage the pain and motivates them to handle their condition better.
Meeting similar individuals opens doors to newer lessons and insights that can prove extremely beneficial.
Support Groups for AS in India
AS support groups are still in their infancy in India.
Ankylosing Spondylitis affects young adults and makes them incapable of doing basic daily activities. The pain and stiffness limit their movements and affects their emotional well-being.
Lifestyle changes are extremely important, but to deal with this condition patients need to have a good understanding of AS. They should be able to share their thoughts and struggles freely, to find comfort and benefit from the treatment.
Here, support groups play a vital role in strengthening a patient’s understanding of AS.
However, lack of awareness about the disease and apathy has prevented such groups from being a part of the natural course of action.
However, the Indian Rheumatology Association is making efforts to get various groups under one umbrella and facilitate patient advocacy. Presently there are two known groups supporting AS patients in India that are helping bring awareness for the disease.
Antardhwani and India StandForAS provide education and information on managing the disease via seminars, events, and workshops.
(Dr Ramesh Jois is a Consultant Rheumatologist at Manipal Hospital, Bangalore.)
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