Ankylosing Spondylitis Welfare Society is a patient organisation which was formed in 2020 to support fellow AS warriors pan India. As patients, we realised that most patients went to their local doctors, Orthopedics or focused on alternate medicines because there was no awareness about Ankylosing Spondylitis. Young patients and women especially experienced delay in diagnosis and were termed lazy or inept. We felt it is the need of the hour to create awareness about this disease so that it is not shrugged out as “just back pain” or as “one not being strong enough.” For that, we want to collaborate with various schools/colleges/offices/corporate houses so that they help us spread the word. This will help identify its symptoms early and not AS remain an invisible illness as it is currently.
Many people are unaware that AS can lead to other concerns involving various medical specialties. We want to make people recognize various manifestations of the inflammation so that they are better able to understand their illness through other symptoms than just joint aches and pains. We all aim to create a referral pathway so that various specializations can help us identify AS early and guide the patients to Rheumatologists who can then help them deal with the disease in the right direction.
As India is a very diverse country with various cultures, role expectations and demands, we want people close to the warriors to realize the depth of the disease and the changes – both physical and emotional – 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 ones 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 female AS warriors to be able to talk openly with us about their intimate problems – be it family expectations, marriage, being told “Women don’t get AS and they are faking it”, conception, pregnancy, child care, periods, mood swings and the likes. 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 they want.
One of the biggest problems that we have seen is that warriors are not able to afford even pain killers 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 and they themselves watch helplessly as they deteriorate gradually. AS is not covered by National 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. Till we are able to achieve this, we want to facilitate support through various other charitable and funding sources to help them achieve their funding goal. Also, where permissible, we would like to fund and/or guide them for medicines, doctor visits, surgeries and care to give them the chance to deal with this illness humanely.
Overall, we wish that AS patients are treated with respect and empathy by people and medical professionals around them. They are able to seek guidance and support during this difficult process and that they don’t suffer simply because Ankylosing Spondylitis is considered to be an invisible illness.