Rare Disease Day on Feb. 29 is an important advocacy effort for every one of us fighting a rare disease, every minute of every day. It is a day for spreading awareness about us and for helping people to learn about our conditions.
In South Africa, where I live, a condition is considered rare when it affects fewer than 1 in 2,000 people. Over 6,000 rare diseases have been identified to date, affecting almost 4 million people in South Africa and an estimated 300 million or more worldwide.
Due to the low prevalence of each disease, medical expertise often is lacking, public knowledge is scarce, care can be inadequate, and research is limited. Despite the number of people who are affected, I view rare disease patients as the “orphans” of health systems, as we frequently are denied diagnoses, treatments, and other benefits of research.
Many patients suffer and are uncertain of their condition or which treatments are available, due to a lack of funding or other resources.
South Africa is still a developing country. Following President Cyril Ramaphosa’s State of the Nation address on Feb. 13, the Department of Statistics released figures showing that sadly, about a quarter of South Africans live below the extreme poverty line, which is about $37 per month, according to BusinessTech.
Additionally, about 56 percent of South Africans earn less than $82 per month.
Imagine living on just $1.20 a day — as those at the extreme poverty line do — and needing to feed yourself and your family.
Not everyone owns a cellphone or has an internet connection. People may have to wait an entire day to see a doctor at a local clinic. Often, they leave with no answers when doctors are unfamiliar with a rare condition.
Cultural factors also may come into play. Some believe that being chronically ill or “different” is related to a type of curse by a traditional healer known as a “sangoma” or an evil spirit known as “Tikoloshe.” As a result, neighbors might shun someone who has a chronic condition due to the fear that the “curse” might extend to them.
This is our reality. We don’t have private healthcare for everyone who lives here, and many patients can’t afford lifesaving medication. So, they rely entirely on donations and public healthcare, which isn’t much. As a patient with myasthenia gravis, my main medication, Mestinon (pyridostigmine), often is out of stock at public hospitals, while private patients can obtain it via their medical aid program.
This medication keeps us alive and gives us the quality of life that we deserve. It is just one example of something that affects me directly, but what about other patients?
I hope that among those who observe Rare Disease Day this year are people from every walk of life and every income bracket. I hope people participate regardless of where they live — whether a shack or a mansion — and that a full range of diversity is involved, from black to white, from diagnosed to undiagnosed, and from sick to healthy.
We need to speak out about this to everyone we meet. We need to wear our ribbons to spark conversation. We need to put posters up in our workplaces and at our children’s schools. We need to ask our local businesses to get involved. We need awareness events driven by passion and love.
In line with this year’s theme in South Africa of “Reframing Rare,” Rare Disease Day 2020 is an opportunity to be part of a global call for policymakers, healthcare professionals, and care service providers to better coordinate all aspects of care for rare disease patients and their families, and to dispel the myths and misconceptions about rare diseases. We need to work together to #ReframeRare. This is our reality.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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