Saturday, July 22, 2023

Patient Academy for Innovation and Research with support from BAYER collaborates with RD National College in Mumbai to raise mass awareness on Endometriosis, through the ‘EndoRun’.

• 42 million women in India are burdened with endometriosis 
• Diagnosis of the condition is often delayed by 6-10 years, significantly reducing a woman’s overall quality of life

22nd July 2023; Mumbai, India: As a continuation of the efforts during Endometriosis Awareness Month in March, Patient Academy for Innovation and Research (PAIR) with support from Bayer completed the final leg of the first-ever EndoRun at R.D National College in Mumbai, today. The EndoRun is a mass awareness initiative that brings together survivors and their families, healthcare providers, researchers, and advocates, to march for a shared cause around endometriosis. The goal is to raise awareness about endometriosis, spark a national conversation around the condition, and call for greater support and resources for individuals and families affected by it. The awareness initiative saw more than ~150 participants from various patient groups.
Previous phases of the initiative were concluded earlier this year on 25th March in Delhi, 26th March in Pune, and 2nd April in Kolkata. 
Endometriosis is a common, chronic, gynecological condition, which affects over 247 million women globally and 42 million women in India1. It is a condition where tissue similar to the lining of the uterus grows outside of the uterus2. Women with endometriosis suffer from chronic pelvic pain, fatigue, depression, and infertility. Diagnosis of the condition is often delayed by 6-10 years, significantly reducing a woman’s overall quality of life. 
The EndoRun started from R.D National College, Mumbai. The event was graced by Mr Manoj Saxena (Managing Director, Bayer Zydus Pharma), Dr. Ratna Devi (Director, Patient Academy for Innovation and Research, Dr. Hemant Kanojiya (MBBS, MD - Obstetrics & Gynecology, DNB - Obstetrics & Gynecology Laparoscopic Surgeon) , Dr. Ashlesha Tawde Kelkar (MD. FRSPH Community Medicine & Public Health specialist), along with Radhika Jhaveri (Nutritionist, Certified Endometriosis Expert, founder of The Pain-free Endo System) They spoke on the importance of endometriosis awareness, the current challenges faced by women, and the need for clinical advancements in this area. 
"Endometriosis is a health condition affecting millions of women in India. We are delighted to partner with PAIR and provide support to initiatives that will contribute to helping women access better healthcare solutions. At Bayer, our goal is to improve the health outcomes of women through research and development and by introducing new treatment options for diseases including endometriosis. As we conclude the final leg of the EndoRun today, I would like to commend the traction and engagement this initiative has garnered across different cities. Such initiatives encourage open conversations about women's health issues " said Mr Manoj Saxena, Managing Director, Bayer Zydus Pharma.
Dr. Ratna Devi, Director, Patient Academy for Innovation and Research, said, “Raising awareness is crucial to address the issue of delayed diagnosis and treatment for women experiencing severe symptoms and excruciating pain. Unfortunately, their voices often go unheard or are dismissed as women’s health takes a backseat in many households. It is imperative to advocate for improved early detection and treatment options. Creating a safe and supportive environment where women can openly discuss their experiences and provide mutual support is an urgent necessity.
Radhika Jhaveri, Nutritionist, Certified Endometriosis Expert, founder of The Pain-free Endo System said “When my symptoms first began at the age of 13, I had no clarity on how my pain originated. Only after the age of 30, when a gynecologist diagnosed me, I started learning about endometriosis, its causes, and management. Early detection and timely diagnosis are extremely crucial. Misconceptions persist due to the lack of credible information on the different treatment options available. One of the most common myths that I have encountered is that endometriosis goes away after conceiving, which is not true. Events such as the EndoRun are important as they offer a platform for women to come together as a community and raise much-needed awareness. It empowers women and makes them feel seen, as this is a condition that requires a lot of support from family, relatives, and the community at large.” 
Dr. Hemant Kanojiya (MBBS, MD - Obstetrics & Gynecology, DNB - Obstetrics & Gynecology Laparoscopic Surgeon) appreciated the initiative and said, “Endometriosis is an enigmatic disease. The only way we can tackle this problem is by creating more and more awareness. Educating all stakeholders like the women and even the healthcare professionals who form the first contact point for these patients. As there is no screening test available yet, we need to rely on the symptoms of the patients. We need to be alert on the red flags like severe pain during menses, painful intercourse etc. Usually it is not picked up in the early stages and progress to cause critical problems. It can severely affect the quality of life of women. In order to prevent misdiagnosis and mistreatment, these women need specially trained endometriosis specialist or excision surgeon to get the optimum treatment at the right time. The ultimate goal is to improve the quality life of these patients by taking a holistic 360 degree view and to customise the treatment for every patient. We need more events like these to improve the understanding of this disease.”
A coffee table book which is a collection of patient stories, detailing their personal experiences, with an aim to empower the community to connect with gynecologists to understand their condition better was also relaunched. The book will equip fellow endometriosis patients to understand their condition through the perspectives of these women.

No comments:

Post a Comment