Oct 03, 2015
Most patients’ symptoms first begin with the need to urinate more and more often. Similar to the urge felt when experiencing a urinary tract infection, it’s the feeling of urgency that, if denied, quickly develops burning sensation, abdominal pain, cramps of the worst kind that, even when relieved, leaves the feeling of needing to go again soon. Over the weeks and months there are countless trips to physicians’ clinic, general physicians, gynecologists, urologists and the pain and the need to use the bathroom again and again – sometimes as much as 30 times a day and 10 to 12 times at night. It hurts to stand up, is a nightmare to walk even a little distance and, in the end, there is only exhaustion and isolation.
There is the feeling that no one understands what you must endure just to have the appearance of a normal life. How you must avoid certain foods, avoid stress. How you have become frustrated from the lack of sexual intimacy. The guilt you feel at limiting your activities with your children. The indignation you feel to be at the mercy of retail clerks who watchdog the store’s “Employees Only” bathroom.
Welcome to the world of an Interstitial Cystitis patient.
What is IC?
Interstitial Cystitis/Bladder Pain Syndrome (“IC/BPS “) is a chronic urinary bladder disease characterized by erosion of the lining and chronic inflammation of the bladder, pelvic pain and increased urinary urgency and/or frequency. As a clinical entity, IC/BPS is not well defined, poorly understood, inadequately treated and is extraordinarily bothersome to the patient.For many IC/BPS sufferers, their symptoms of constant pain and urinary frequency are severe and adversely affect all major aspects of their lives, including overall physical and emotional health, employment, social and intimate relationships, and leisure activities.
Hundreds of thousands of people, especially women, suffer silently from this condition. Early estimates had put the number of patients in the US at around 1-2 million. However, the recent RAND IC Epidemiology (RICE) study estimated a prevalence of between 3-8 million women in the US with IC/BPS.
The key symptoms of IC/BPS include:
- Pain in the pelvis or between the vagina and anus in women or between the scrotum and anus in men (perineum).
- Chronic pelvic pain.
- A persistent, urgent need to urinate.
- Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis may urinate as often as 60 times a day.
- Pain or discomfort while the bladder fills and relief after urinating.
- Pain during sexual intercourse.
The severity of symptoms caused by interstitial cystitis often varies.Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, urine cultures are usually free of bacteria. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection.
IC in India
There are no official statistics for IC/BPS in India. However, based on an extrapolation of the RICE study, there could beat least 2 crore patients in India.Even on a conservative basis, if we consider 10% of this, there are around 20 lakh sufferers. There have been many challenges with the spread of IC awareness in India. The disease is thought to be one of the western world and hence ignored. There is very little and scattered awareness of IC among urologists. Diagnosis rates are very low, with next to no treatment.
Diagnosis of IC
Awareness about IC/BPS is still lacking among doctors leading to patients sometimes going through 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 medicines that can actually worsen the symptoms.IC/BPS is accepted to be one of the most challenging conditions without an effective therapy.
The diagnosis of IC is one of exclusion. Because symptoms are similar to those of other disorders of the urinary system and since there is no definitive test to identify IC, doctors must rule out other conditions before considering a diagnosis of IC. Among these disorders are urinary tract or vaginal infections, bladder cancer, bladder inflammation or infection caused by radiation to the pelvic area, eosinophilic and tuberculous cystitis, kidney stones, endometriosis, neurological disorders, sexually transmitted diseases, low-count bacteria in the urine and, in men, chronic bacterial and nonbacterial prostatitis.
There is no known cure for IC/BPS, although a number of therapies can relieve symptoms. The only approved oral therapy is an agent, Pentosan Polysulfate Sodium (PPS), first approved in 1996, which helps to temporarily restore the bladder lining. Other therapies include such approaches as antihistamines, low dose antidepressants to fight neurogenic pain and analgesics. With the exception of PPS, most current therapies and those in development are focused solely on symptomatic relief of IC/BPS. In addition to oral therapies, direct instillation of drugs into the bladder via catheter (intravesical therapy) has been shown to provide relief of symptoms.
An initiative to change the global IC scenario by Swati Spentose Pvt. Ltd.
Swati Spentose Pvt Ltd is a pharmaceutical company in Mumbai, part of the V group, with a 45 year old established history behind it, and with clients in over 60 countries word wide. SSPL’s ultimate goal is to bring new heath solutions for suffering patients and deliver the same to them with compassion and empathy.
PPS, the only approved oral treatment for IC/BPS, has been a very expensive medication, being launched only in the US by the originator at a cost of nearly $800 for a month’s medication. SSPL has made this product available in India under the name Comfora at a fraction of the cost and is launching the product in over 30 countries with a view to making it affordable globally. The company has also engaged some of the best minds in polysaccharide chemistry, including experts in characterization, manufacturing, analyticals and clinical studies as well as a top notch team of clinicians to make sure the product is of the highest quality and is as effective as possible.
The company had recently invited the internationally acclaimed urologist, Dr. David Kaufman, for a series of conferences in Mumbai, Thane and Delhi to educate Indian urologists and gynecologists about IC/BPS. The meetings were co-chaired by Dr. Sanjay Pandey of Kokilaben Hospital, thane. The conferences were aimed at teaching doctors how to diagnose and manage patients suffering from the disease. Both Dr. Kaufman and Dr. Pandey stressed on the need of awareness at the grass root level, as there are hundreds of thousands of patients who go undiagnosed and suffer silently their whole lives. It is very crucial that doctors across the country are well aware and educated about this disease, so that they can diagnose and then treat or redirect patients to the right specialist.
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. It hopes that media in every country can take this awareness campaign to the next level so that the masses are aware that there is such a condition and that this condition can be treated effectively. SSPL is on a mission to not only make treatment available to patients suffering in India and to the rest of the world, but to also conduct research for new drug delivery systems in order to alleviate the suffering of patients. The company calls upon support of every individual to join its mission of “Save the bladder”.
Corporate Comm India (CCI Newswire)
