Awareness for Interstitial Cystitis- Why is it Important

Awareness for Interstitial Cystitis is important because this is a debilitating disease where patients often do not get diagnosed or get misdiagnosed due to lack of awareness among doctors, nurses, health workers, and the general public. This is a rare autoimmune chronic disease that causes unbearable pain, burning, urine frequency (almost 30 times in a day), urine urgency and turns the life of the patient into a nightmare.  

Why is it important to raise awareness of rare diseases in general?

Rare diseases are frequently debilitating, and patients may face additional challenges because of limited knowledge. Symptoms of rare diseases may resemble those of more common conditions, which often leads to a significant delay in getting a correct diagnosis. For example, IC is always confused with chronic urinary tract infection. Even after a diagnosis is made, treatment options can be inadequate; they are often very expensive, unavailable in certain countries or may require high levels of palliative care. IC drugs and therapies are extremely expensive. Many patients from the lower income group often discontinue their treatments due to financial pressure. 

The good news is that research into rare diseases is focused on looking for ways to better diagnose, treat, reduce the financial burden and cure rare diseases. However, it can be particularly challenging because of limited funding, small patient groups and the need for international collaboration. 

What can we do as patients?

The insight that patients provide and the impact they have with their commitment to raising awareness of rare diseases should not be underestimated. Patients can actively get involved in the research process by engaging in planning studies, raising funds and connecting to form patient networks. They can also directly contribute by reporting health outcomes and providing indispensable samples for research, which might be the only source of data for some diseases.

By raising awareness about Interstitial Cystitis, we can improve early diagnosis, encourage policymakers to increase access to services and fund research,  as well as reduce the feelings of isolation or the discrimination faced by patients.

How to raise awareness about IC in India?

Like any other rare disease, awareness is the key to diagnosis in case of Interstitial Cystitis. Numerous patients go undiagnosed in India as there is very little awareness among doctors, nurses, health workers, and the general public. Whenever a patient gets the symptoms he/she goes to the General Practitioner (GP) and most GPs are completely unaware of this condition. Female patients go to gynecologists and kids go to the pediatrician and again the same story of lack of awareness is repeated. Only urologists have a fair knowledge about Interstitial Cystitis but they suffer from different prejudices. Many Indian urologists still consider IC as a Caucasian disease and firmly believe that it doesn't affect Indians. Another set of Urologists feel that this is such rare condition that it can never occur to any patient. Thus, most patients get treated for chronic urinary tract infections with very little or no cure. The worst doctors are those who think that this is an imaginary condition and patients are just imagining their pain. 

India is not the only country where patients are not believed. IC patients all over the world have faced this kind of situations where they were told that they have no pain and it is their figment of the imagination. The biggest struggle for an IC patient in getting diagnosed is to convince her/his doctor about the symptoms. Most doctors are not convinced and they lack compassion.

When the doctor refuses to believe the patient then automatically no one else believes them. They are then referred to Psychiatrists and family members also start disbelieving and feel that the patient is faking the pain. This is undoubtedly the most unfortunate thing for any patient.

IC is not only a rare disease it is also an auto-immune chronic condition that is debilitating for the patient and therefore it is extremely important to show compassion to these patients. We are trying to raise awareness through Interstitial Cystitis India. We have collaborated with various national and international groups to raise awareness and hopefully in near future IC patients will find relief.

Books that Helped to Heal my Interstitial Cystitis

In the autumn of 2015, I was crying in pain due to my interstitial cystitis. I was in such severe pain that even going to the washroom was difficult, nevertheless, I was dragging myself to the washroom every 10 minutes to pass urine because that is how IC flare works. The pain was so severe that I felt death would be better. I was telling my husband "if I have to live like this for the rest of my life then it is better to die." I almost begged him "please kill me, I don't want to live".

A couple of months prior to that day, I had been diagnosed (finally) with interstitial cystitis. I was diagnosed after changing around seven doctors from general physician to gynecologists to hospital ER and then lastly urologist. The urologist was the person who ultimately diagnosed me after three months of 'trial and error'. I was on all kinds of medicines but nothing seemed to work. My life was a living hell.

In the meantime, I had heard and read that Interstitial Cystitis is incurable. I felt, like many other IC patients around the world, my life was doomed. I saw no hope anywhere and precisely then I came across the books by Catherine Simone and they changed my whole perspective about Interstitial Cystitis. In her books, Simone claimed that IC is CURABLE and anybody even with severe symptoms can get healed by following the holistic method of treatment through diet and natural remedies. I bought all three of her books through Amazon.com. I started following her books quite religiously and within a month I saw a change in my symptoms. 

Catherine Simone used to be an IC patient who cured herself through holistic treatment. Following is her statement "As the first person to write about IC from a holistic perspective, the first to come out and say that IC is not just a bladder disease (To Wake In Tears 1998), I still believe that the hope for IC patients lies within a broader perspective of IC with an open mind to alternative treatment options. Since 1995, I have spoken to thousands of IC patients from all over the world offering support, understanding, and gentle guidance in the area of alternative medicine for IC and its related conditions. I know how difficult it is to believe that you can get well when everyone is telling you that you can't. I am here to tell you that you CAN get well, that there truly IS hope to fully heal from IC. As I say in my books, Just because they haven't figured it out yet, it doesn't mean that you can't get better."

The books are available in a three-part series, where Simone talks about her journey from pain to recovery. The third book is the best where she details out all the list of herbs and therapies that can be used to heal IC. This book is almost like a Bible for IC patients and should not be missed at any cost.

Below are the links to the books by Catherine Simone. If you are an IC patient then I would recommend you to buy these books as these books can truly change your life. I would request you to buy the books using the following links. Amazon has recently reduced the price of the books and they are worth the price. So click on the link and start your healing journey. 

Patient Access Advocacy Workshop- New Delhi, 2019

Indian Alliance of Patient Groups (IAPG) in collaboration with Global Alliance for Patient Access (GAFPA), International Alliance of Patients' Organizations (IAPO) and International Institute of Health Management Research (IIHMR) organized a Patient Access Advocacy Workshop at Lalit Hotel, New Delhi.

The workshop focused on how patients groups can work together to make healthcare more accessible to people. How patient advocates can create a shared responsibility with providers so there can be better communication. And the focus of the meeting was how patient advocacy groups can reach to policymakers, create accessibility and their role in better management of the disease. It was a great effort towards better healthcare and how to make it reachable to everyone.

"Every day across the globe, advanced treatments offer new hope for patients. New advances in medicine may treat or cure diseases that were disabling, even terminal.
But they also present new challenges for policymakers and governments, who must ask: How will these treatments be approved?  Regulated?  Paid for?  To answer these questions, policymakers need to hear from those who will be directly affected — patients and physicians.
That’s why GAfPA works internationally to educate, empower and mobilize physicians and patient advocates. Their unique insight can guide policymakers to make informed decisions about value, safety, cost and, ultimately, patient access."

The main agenda of the workshop was to discuss access in the context of patients. To understand if the needs and aspirations of patients really met. What can be done to cover the gaps? And most importantly discuss the role of Science and innovation in increasing access.

Dr. Chaitanya Koduri spoke about an important issue regarding the quality of medicines. Mrs. Manjiri, Vice President of Indian Pharmaceutical Association (IPA) spoke about the necessity of a Pharmacist in medical shops to stop malpractices. She spoke about the danger of overuse of antibiotics.

Brian Kennedy, CEO of GAfPA gave a small training on Patient Advocacy where he gave pertinent examples from the USA that could fit in the Indian context. It was an engaging speech.

Mr. Brian Kennedy

The concluding session by Denny John was all about shared decision making between patient and medical practitioner to improve patient engagement. 

This event was attended by patients advocates from all over India. Balaka Basu, founder of ICI and Arun Dahiya, Research Head and Social Media Specialist of ICI attended the meeting. Another patient from Delhi Dr. Jagruti also attended. The other patient advocates were Kirtida Oza from Sjogren India, Mr Anil Chaubey from Prader Wili syndrome India, Mrs. Mitra Sen from Parkinsons Patient Welfare Society and Mrs.Sobha Bhattacharya from GNE-Myopathy also attended. It was an amazing experience to interact with so many patient advocates.

Rare Disease Patient Advocates

Balaka Basu asking a question. Arun Dahiya and Dr Jagruti also present

Balaka Basu and Arun Dahiya