speaking out for the crohn's and colitis community

by: denise j. deveau – postmedia content worksmina mawani is and has always been passionate about helping people. she has carried that passion to her role as president and ceo of crohn’s and colitis canada, the national volunteer-based charity focused on finding the cures and improving the lives of canadians affected by inflammatory bowel disease (ibd).since taking the helm in 2015, she has worked tirelessly to raise awareness for this ever-growing community of people who often feel alone. she has been instrumental in paving the way for positive policy reform, as well as introducing a nationwide advocacy program that is transforming the day-to-day lives of patients.mawani has been a high-profile spokesperson and award-winning philanthropist for many years. her family were business owners in uganda who came to canada as refugees after being expelled by idi amin in the 1970s. “my family built a life in canada from nothing. i grew up understanding the importance of working hard to achieve your goals and also the importance of giving back to your community.” she has put great stock in her ismaili muslim faith that encourages charitable deeds and helping those in need.as a speaker in high demand, many of her presentations are focused on the challenges facing the crohn’s and colitis community. she is also actively engaged in women’s events and invests her spare time in various forums. “i always strive to make sure women and girls have a voice, and am passionate about gender parity. more women in leadership positions will help us create an environment that is supportive of women in underserved fields.”her education and early career were a mix of clinical science and business. working several years in both the private and public sectors provided a solid foundation for work in the charitable/not-for-profit sector, which she began more than 15 years ago.when she was approached to lead crohn’s and colitis canada, she realized it was an opportunity to combine her passions for science, health care, business and community into one.the fact that the crohn’s and colitis community needed a vocal champion was an added draw. “the issue with crohn’s and colitis is that they are invisible diseases. someone living with ibd often looks healthy from the outside. what you don’t see are the devastating surgeries, flares and pain they have experienced. many feel like they are living in isolation and with little support. this community also faces many challenges, such as access to washrooms, treatments and specialized care, particularly in rural areas.”since joining the organization she has broken new ground in awareness-building and patient support. the focus is on amplifying patients’ voices on issues that matter to patients and their caregivers, such as ensuring that medical decisions are left between patients and their doctors.“when the organization was founded it was primarily to fund research,” mawani explains. “we knew that more needed to be done to support people with crohn’s or colitis right now. we went to our community to truly understand what was important. our approach is patient-centred.”having conversations with the ibd community they serve is the most important part of crohn’s and colitis canada’s strategy and decision-making process, she says. “we talk to patients, caregivers, volunteers, donors, researchers, nurses and physicians to understand their perspectives first and foremost. we are extremely fortunate in our vast network that includes a truly engaged and trusting patient and caregiver population. we are able to tap into these critical relationships to understand the needs of the community but also to understand how to respond and act on policy decisions affecting people with crohn’s or colitis.”the purpose of this approach is making sure that patients are listened to — and more importantly, that they are heard, she adds.the patient-centred approach is demonstrated in a current campaign that highlights government interference in treatment decisions for people with crohn’s or colitis. a pillar of the campaign is providing the community with an easy way to express their voice to local government through a web-based platform (action.crohnsandcolitis.ca/choice) to have greater impact.“current government policy decisions have unfairly blind-sided our community. that a bureaucrat in a government department can put the health of someone with crohn’s or colitis in jeopardy with a stroke of a pen is simply wrong,” she stresses. “i encourage all patients and caregivers to lend their voice to this issue through our campaign.”these pending policy decisions that mawani refers to as “non-medical switching” are a top priority for crohn’s and colitis canada and demonstrate her dedication and determination to speak on behalf of the ibd community. “when governments won’t pause to listen to thousands of patients who are terrified that they will lose their hard-won quality of life for dubious political reasons, it shows me a clear path. my role is to amplify that voice and to do what is right for patients and their families.”it is these kinds of injustices that give her energy and purpose and an appreciation for her experience in speaking and advocating for women’s groups. “my work with crohn’s and colitis canada really enforces the importance of encouraging women in canada to take a leadership role. in this community, women are caregivers, patients, experts and a critical voice toward optimal care. i am continually honoured to contribute to this important cause.”the facts about crohn’s and colitiscrohn’s and colitis are diseases that few people understand. that’s why mina mawani has made it her mission to educate people on the profound impact these “invisible diseases” can have on people’s lives.“many people are unaware of the fact that canada has one of the highest rates of inflammatory bowel disease in the world. not only that, the number of canadians living with ibd is projected to increase 50 per cent by 2030. this is a situation that we can’t afford to ignore.”the facts:crohn’s disease and ulcerative colitis are the two main forms of ibd.today, more than 270,000 canadians live with ibd. of those, 135,000 live with crohn’s and 120,000 live with colitis.one in 140 canadians live with ibd, with seniors representing the fastest-growing demographic.over 7,000 canadian children under 18 are living with crohn’s or colitis. the prevalence in children has risen more than 50 per cent in the last 10 years.crohn’s and colitis can be diagnosed at any age — from newborns to the elderly.10 per cent of newly diagnosed cases each year are in children.crohn’s affects more females than males, with peak onset between the ages of 15 and 35.the onset of symptoms includes severe abdominal pain, fatigue, internal bleeding and weight loss.the exact cause of ibd is unknown. researchers believe that genetics and environmental factors may play a role in increasing a person’s risk of developing the disease.there are no existing cures. there are medications that can help to relieve symptoms and control the inflammation.more severe or unresponsive cases may require surgery.crohn’s and colitis canada is the only national, volunteer-based charity focused on finding the cures for crohn’s disease and ulcerative colitis and improving the lives of everyone impacted by these diseases.since 1974, crohn’s and colitis canada has invested over $127 million in research to find the cures and improve treatments, making it the second-largest health charity funder of crohn’s and colitis research in the world.for more information, visit crohnsandcolitis.ca.