Image supplied by Rare Disease South Africa for Rare Disease Day
Living with cystic fibrosis (CF) in South Africa can be challenging, but it also makes us unique. There are roughly 550 people who have been diagnosed with CF, though this figure may be slightly higher due to patients being undiagnosed or misdiagnosed in the past when CF was relatively unheard of. CF is receiving a lot of media attention lately. SACFA and the CFNF committee have formed a “coalition” of sorts with Rare Diseases SA, Vertex Save Us, and Just Treatment with the intention of accessing affordable lifesaving CFTR molecular therapies for all patients.
CF patients and their families in South Africa have a strong sense of community and support. We connect with one another through patient groups, social media, and other support networks, sharing information, advice, and experiences. These networks provide a platform for advocacy and awareness. We are a family that celebrates each other’s accomplishments and weeps when a loved one receives angel wings. Our doctors and nurses are highly skilled and dedicated to providing the best medical care.
As a community, we remain hopeful and optimistic about the future. We are strong, courageous, and determined individuals who refuse to let this disease define us. We inspire others with our resilience and ability to overcome obstacles.
Time is the most precious commodity on earth, and we do not take it for granted. As South Africans, we may face challenges, but we also have the strength and determination to overcome them. On International Rare Diseases Day, we celebrate our uniqueness and stand in solidarity with all those living with rare diseases. We are not alone, and we will continue to support and advocate for one another.
The New Frontiers committee is hosting an in-person and Zoom conference on March 13 in Cape Town to delve into the latest advancements and treatments for this devastating disease. Our experts will cover critical topics, including the need for access to modulators, the ongoing struggle to secure them, and alternative options for those seeking treatment. Hear from individuals with personal experience, including the inspiring story of a double lung and liver transplant recipient, as we come together to advocate for better access to life-saving medications and reignite hope in the CF community. Whether you are a healthcare professional, a CF patient’s loved one, or simply seeking to learn more about cystic fibrosis, this event is a must-attend for anyone seeking hope, inspiration, and meaningful change. Be a part of this transformative experience and leave with renewed hope for the future.
To register for the event https://newfrontierscf.com/