Balaka Basu is shared her journey with Interstitial Cystitis on Everyday Gyaan the other day. It’s amazing how she channelizes her pain to create awareness of the disease. Today, she’s sharing from her experience, the role of patient support groups in chronic diseases.
Role of Patient Support Groups in Chronic Diseases
Unlike Western countries, Patient Support Groups are not common in India. Due to the absence of proper infrastructure, managing a patient support group in India is a difficult task. Additionally, Government apathy, lack of funds and social stigma affect the smooth functioning of support groups.
Since 2016, I have been running a patient support group for a rare disease called Interstitial Cystitis. The Interstitial Cystitis Patient Forum is the only support group for Interstitial Cystitis patients not only in India but in Asia (except Japan). In our group, we have patients coming from Bangladesh, Nepal, Sri Lanka, Myanmar, Indonesia, Abu Dhabi and even Pakistan.
The main objective of the Forum is to raise awareness about the disease not only among the general public but also among medical practitioners. The other objective is to help the patients cope with the disease.
Diagnosed with Interstitial Cystitis
In 2015, when my Urologist said that I have Interstitial Cystitis, I had no idea about the disease. I was not the only person who was ignorant of this disease. Many doctors all over the world are not familiar with this disease. Urologists are the only specialists who have an idea about this disease however even they lack clarity as there has been no extensive research on this disease. Interstitial Cystitis is one of the Orphan Diseases that is neglected all over the world.
Interstitial Cystitis is an inflammation of the bladder that leads to symptoms like urethral burning, pain in the pelvic region, frequency and urgency in passing urine, urine retention and discomfort while having intercourse. The symptoms are often overlapping with other diseases. Mostly Interstitial Cystitis is confused with Urinary Tract Infection. However, in most cases the urine report shows no or mild infection.
I started researching online about the disease. During this time I came across a few international support groups. I started seeking help from them. I realised that support groups are an excellent medium to get help for any patient. Inspired by them, I established this support group. Initially, we were just three patients but now we have close to 350 patients.
The biggest challenge for any interstitial cystitis patient is to get diagnosed. Firstly 80% of the patients are women and whenever they face any problem they visit a gynaecologist. Unfortunately, most gynaecologists have no knowledge about this disease. Secondly, Interstitial Cystitis cannot be clinically diagnosed and in most cases, the urine or ultrasonography reports do not show any irregularity and therefore the doctors often feel that the patient is imagining the problems. Almost 90% of IC patients across the world have at some point been told that they are imagining their symptoms. Many have been put on anti-depressants or sent to psychiatrists. Our objective is to guide the patients to the correct doctor who has knowledge about the disease and also gives tips on ways to stay symptom-free. Often, due to continuous suffering, patients go into depression. Another objective of the Forum is to help patients to live a positive life. We often also counsel the family members of the patients as well.
Managing the Disease
Interstitial Cystitis is incurable but with proper diet, medicine and therapy patients often go into remission. Interstitial Cystitis patients need to be treated in a multidisciplinary way by a Urologist, a Pain Therapist, a Pelvic Floor Therapist, a dietician and also at times a Psychiatrist/ Psychological Counsellor to deal with their pain induced depression. Often getting all these doctors on board becomes difficult. For example, in Italy and Spain, they have dedicated centres for interstitial cystitis where a patient can get access to all the doctors under the same roof. In India, having such a dedicated centre is nearly impossible at this moment.
The Importance of A Support Group
Interstitial Cystitis is not the only disease that needs this kind of a support group. I believe any chronic disease needs a support group. The good news is that numerous individuals are coming forward to help fellow sufferers. Today we have websites and YouTube channels for different diseases. Like interstitial cystitis, there are numerous other auto-immune diseases but there is absolutely no support for the patients. There are good doctors but a chronic patient needs constant support. That is when peer support groups come into action.
The importance of a support group is immense in helping a patient cope with his/her symptoms. When a patient sees that another person is also going through the same ordeal they often feel confident that they are not alone. Patients often feel comfortable talking about their problems to a fellow sufferer. In many cases, the patient doesn’t open up to the doctors or their families because they feel that no one will understand them, but the same patient often pour out their heart to a fellow sufferer.
I hope the fate of Indian patients lies in the hands of few good Samaritans who will have the courage to stand up and help other fellow sufferers. I wish to see dedicated support groups for all chronic diseases in near future.
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