Member Spotlight: Ankylosing Spondylitis Welfare Society

Ankylosing Spondylitis Welfare Society (ASWS), a patient-led organisation was established in 2020 to support fellow AS warriors and their caregivers across India. Being patients, we realised that mostly patients consult their local doctors, Orthopaedic Surgeons or focus on alternate therapies rather than visiting a Rheumatologist due to lack of awareness about Ankylosing Spondylitis and Rheumatology, in general. This leads to delay in diagnosis amongst the patients causing mobility issues, permanent disability and mental health problems.

We aim to create a referral pathway so that various specialisations can help patients identify AS early and guide them to a Rheumatologist who can guide them in the right direction and help them deal with the disease effectively.

To create awareness about the disease amongst the general population we are taking efforts to collaborate with various schools/colleges/offices/corporate houses/hospitals.  We are also organising various seminars, webinars with various medical faculties and using social media to help us spread the word. We are hopeful that this will help in early diagnosis so that AS does not remain an invisible illness, as it currently is.

AS not only causes joint pains but also leads to other co-morbidities as well.  Many people are unaware that AS requires a multi-disciplinary approach. We are trying to make people recognise various manifestations of the inflammation so that they are better able to understand their illness through other symptoms than just aches and pains.

As India is a very diverse country with various cultures, economic disparity, role expectations and demands, we want caregivers to realise the depth of the disease and the changes – both physical and psychological – that a warrior faces. At the same time, we understand that it is not easy for the caregivers to accept this sudden change in their “healthy” loved one and want to provide a listening ear to them as well so that they have someone to share their concerns and fears. We aim to help the family and the patient deal with the disease jointly and understand that no obstacle is hard to overcome if we are in it together.

Also, we want to provide a platform for female AS warriors to be able to share openly, with us, about their intimate problems – be it family expectations, marriage, work, conception, pregnancy, child care, periods, mood swings, or, being told that women don’t get AS and they are exaggerating or lying about their symptoms. We want them to know that they have a reliable confidante in us and they can share all their concerns uninhibitedly and seek guidance in any matter of their concern.

In India, specifically in rural areas, one of the biggest problems that warriors face is not being able to afford even NSAIDs to suppress their pain to a bearable limit. Many patients are diagnosed, yet, are helpless as they can’t afford basic medical treatment. Their families helplessly watch them deteriorate gradually. AS is not covered under any insurance in India, pushing many into dark oblivion. We want to fight for this basic human right so that most have the opportunity to fight this illness and not have their financial condition determine their destiny. Until we are able to achieve this, we want to facilitate support through various other charitable and funding sources to help them achieve their treatment objectives.

Overall, ASWS strives to provide AS warriors with proper guidance and support during this difficult process so that they don’t suffer due to Ankylosing Spondylitis being an invisible illness. We wish that ASers are treated with respect, compassion and empathy by general public and medical professionals around them so that they are able to live a respectful and fulfilling life.

For more information visit: aswelfare.org

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