Symposium on IC/BPS awareness for Doctors
Several conferences were held on Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) organized by Swati Spentose Pvt Ltd (SSPL). The conferences were chaired by Dr. David Kaufman (Chief Urologist, Central Park Urology, New York) and Dr. Sanjay Pandey (Consultant Urologist – Kokilaben Hospital), who shared their experiences and strategies in diagnosing and managing patients suffering from IC/BPS. The goal of these conferences was to educate and make doctors aware of this condition and provide options on how to manage it, as the awareness of this disease is extremely low even among Urologists and Gynecologists.
IC/BPS is a chronic and debilitating disorder of the bladder accompanied by frequent and painful urination. It is believed to be caused by damage to the Urinary Bladder lining. Typical patients report urination more than 40 times a day
Patients are forced to rethink travel plans, long meetings and movies or dinners at restaurants with family and some even have to consider the option of wearing adult diapers. This disease therefore has severe impact on all aspects of life including social, professional, sexual and day to day routine activities. There have been reports of people even contemplating/considering suicide because of the disease.
As a clinical entity in India, IC/BPS is not well defined, poorly understood, inadequately treated and is extraordinarily bothersome to the patient. Hundreds of thousands of people, especially women, suffer silently from this condition. Awareness about IC/BPS in India is still lacking among doctors leading to patients sometimes going their whole lives without a correct diagnosis and proper medication. Many times patients are misdiagnosed as having urinary tract infections or other diseases and are prescribed with products that can actually worsen symptoms.
Both Dr. Kaufman and Dr. Pandey stressed on the need of awareness at the grass root level, as there are millions of patients who go undiagnosed. It is very crucial that doctors across the country are well aware and educated about this disease, so that they can then treat or redirect patients to the right specialist.
SSPL’s vision is to medicate responsibly and to ensure that all patients should be aware of what disease they are suffering from and have access to medication irrespective of profits to the company. To this end, it has invested a vast majority of its profits back into research on developing novel health solutions starting with launching its own brand in India at a fraction of the international cost and working towards new drug delivery systems. SSPL is on a mission to spread awareness of IC/BPS, starting with these conferences, and will be organizing many such events and training workshops all across the country including 2nd and 3rd tier cities, aimed at educating both urologists and gynecologists, and it calls upon media and the doctor fraternity to play its part in ensuring that patients do not suffer for lack of information.Click edit button to change this text.
Under the umbrella of Swati Orphan disease forum, GIBS in association with Swati Spentose Pvt Ltd (Lead Patron) held its first scientific congress on IC/BPS in Mumbai from August 27 to 28, 2016 to open the subject of IC/BPS and to create awareness among the medical fraternity like urologists and gynecologists about the disease and build consensus among them on the protocol for diagnosis and treatment of the disease. The objective is to develop the standard guidelines to streamline the diagnosis process in order to shorten assessment time in disease and subsequently avoid delay in treatment.
More than 100 doctors from all over India and around 50 from Mumbai have attendant the event. Various scientific developments and clinical applications in the pathophysiology, diagnosis, metabolic evaluation and medical treatment of IC/BPS has been discussed during the meet. Participants found GIBS the best interactive platform to further knowledge and to know latest about subject by sharing experiences and difficulties with others brilliant brains/specialist working on subject. More than 30 attendees registered themselves on the spot for the next annual meet by GIBS to be held in the month of Aug Nov 2017.
One of the IC patient mentioned that, for five years he went through multiple surgeries in last 5 years and he got well by right diagnosis at the hands of experienced and trained clinician specialized and who understand the subject and appropriate medication combination included with main product being our lead brand “Comfora” which is Pentosan Polysulphate Sodium, which established the fact that there are often surgical interventions and antibiotics can be avoided. To avoid this, all doctors Urologist and Gynecologists who attended event confirmed that they invited the muti-disciplinary team to come and learn the subject from those experience clinicians and work together to take the subject globally, at the global conference sponsored by us- ESSIC http://www.essicmeeting.eu/sponsors-exhibitors from 17th to 19th November,2016 and then also invited them to register for the 2017 GIBS which will be held on 27th and 28th Aug 2017 and for which we have limited registration for 50 seats closed door meeting of clinicians across disciplines who will contribute, deliberate and set the way forward and the next days 30 open door meetings with clinicians who wish to hear, learn and know the way forward from these 50 specialists, we already have 30 confirmations for the close group and 80 plus for the conference, this is set at Rs 10,000 registration fee and all have welcomed it whole heartedly and with great excitement.
The team of physicians lead by Dr Rajesh Taneja and Dr Sanjay Pandey conceptualized a body (Global Interstitial Cystitis Bladder Pain Syndrome Society) dedicated exclusively to Interstitial cystitis and Bladder pain syndrome and was assured full infrastructural, secretarial and financial support by Mr Vishal Jajodia, Managing Director, Swati Spentose Pvt Ltd (SSPL). SSPL had a privilege to lead a global initiative on IC/BPS s under the stealth leadership of Dr Rajesh Taneja and Dr. Sanjay Pandey.
IC/BPS is one of the neglecting disease and the subject of bladder pain and bladder damage impacting literally one fourth of the country’s population. Thus, GIBS envisions to take the initiative further by consolidating the present knowledge for future guidelines for the world. Presently US is the only country in the world which has awareness and necessary support system to deal with such IC and BP patients.
GIBS plans to bring out a periodic publication, interactive website for patients and doctors, module to certify doctors as specialist of IC BPS, etc. The guideline being developed by the 10 panel doctors comprising of urologist and gynecologists led by Dr Taneja are likely to be released by GIBS in a couple of months.
We request all stake holders to visit our website www.gibsoceity.org and not only support our initiative in various ways but also, disseminate the necessary information to all the patients and doctors alike.
After the GIBS, SSPL (the platinum, gold and silver sponsor of “ESSIC 2016”) is glad to announce the next land mark meeting of the international authority (ESSIC) on IC/BPS, arriving first time in India with international leaders on the subject. The meeting is being hosted in Delhi for the Month of Nov (17-19, 2016) where global leaders on subject will interact and share their experiences.
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.