The annual conference of the International society for study of Bladder Pain Syndrome, erstwhile known as ESSIC , was recently held in New Delhi, for the first time ever in our country / Asia. This was a proud moment for the Medical fraternity and the country on the whole to have got an opportunity to host the world leaders on the subject of Bladder pain Syndrome. There was a time when this disease entity was considered as a ‘rare’ or non-existent in our part of the world this was due to lack of awareness amongst the health care providers. This story is not unique for our Country, even today this is under diagnosed and under reported in many parts of the world and people keep suffering silently from this disease Bladder pain syndrome is a condition which affects mainly women, even though it is not rare in men. The patient has intense pain on full bladder and has to visit washroom some times almost 30-60 time sin 24 hours period. The misery of the patient is compounded by the fact that no radiological imaging or lab test can diagnose this condition. Since all investigations results appear normal, the family and friends of these patients start doubting the patients complaints and eventually label them as neurotic or attention seekers. The integrity of these patients is doubted and they are sent to psychiatrists and very often in our country subjected to ‘Faith healers”.
ESSIC has been the world leader and has evolved over last decade and a half not only definition of this condition but also an algorithm to diagnosis and treatment of this miserable condition. The research and scientific material is still developing and it is a very proud privilege of our country that globally we have been a meaningful part of this scientific journey. Between 17-19 November, Swati Spentose Pvt Ltd a research based leading company in the world in areas of Orphan & Neglected Diseases, hosted this prestigious group and set up stage for scientific ic deliberations and discussions on the topics on and beyond horizon of the current understanding of this disease. The seeds for this journey were sown way back in 2002 when the company started its research initiatives on the subject. The first two days were the exchange of ideas about how to progress, while the third day comprised of workshop sessions for the clinicians to benefit from the world experts on the subject in order to enhance their day to day practice of managing these cases. The third day also had a patient group session where in the patients met each other and interacted with the global leaders this was a big step to boost their confidence to handle this miserable disease.
This was a novel approach to involve the patient groups to the development of treatment feedback based understanding of the subject. This is just the beginning of a movement, ‘Movement of freedom from Bladder pain’ and ‘save the bladder from end stage’. We have just started and have the privilege to establish the pathway forward for the world as in last 30 years there have been no new solutions for these suffering patients and besides USA the whole world is deprived for health solutions. A lot needs to be done in this regard and India is considered as one of the few global leaders in this field who is taking a global lead on the subject. Swati Spentose pvt ltd, is ready to lead this world initiative on the subject, with their ‘innovation – made in India’ – for the world.
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