BY ADENIYI OYINDAMOLA
Let me be the first to enlighten you about the month of February. It is not just about Valentine's Day or making jest of those whose birthdays fall in February as people whose month is incomplete. The month of February is more significant than that.
There is something spectacular about this month that you may not be aware of, and I intend to help you discover it. So grab your veggies and carbs, lower your cholesterol, and follow me on this insightful ride with no pressure.
February is a rare month. It has 28 days each year and 29 days each leap year. This is the only month in the lunar year that has such unique attributes. This is why some international organizations such as Global Genes, Think Genetic, NORD and EURORDIS have chosen to raise the awareness of rare diseases every last day of the month of February. This year isn't a leap year, and that World Rare Diseases 2018 falls on Wednesday 28th, February.
What is a Rare Disease?
A rare disease is any disease that affects about 1 in 3000 people. There are currently about 7000 different types of rare diseases in the world, such as amyotrophic lateral sclerosis, muscle myopathy, spina bifida, hydrocephalus, hydroencenphaly, muscular dystrophy, cri-du-chat syndrome, pulmonary arterial hypertension, cerebellar ataxia, rett syndrome and many others.
You have probably not heard about the aforementioned diseases, but a rare disease is basically a genetic condition which may be inherited from the parents or which may be caused by sudden malformation of the patient's gene(s).
Unfortunately, most rare diseases have no cure. It is even more unfortunate that most medical professionals are not aware of these diseases, and thus, no researches are made to get a cure. However, the most unfortunate thing is that majority of these patients are misdiagnosed.
Also, in many societies, including here in Nigeria, those with rare diseases and their family are stigmatized because many believe these diseases are caused by supernatural events. In some extreme instances, they are also physically abused and abandoned to die.
Rare disease patients in Nigeria and in most other African countries face a lot of psychological and financial stress as they meet medical doctors, trado-medical practitioners, and religious leaders who swindle them without finding any lasting solution to their health challenges.
This is the reason the Nigerian Red Cross Society (University of Lagos Detachment) and the Foundation for Neuromuscular Support Nigerian took the mantle to spread awareness of rare diseases in Nigeria and beyond. As a result of this initiative, 2017 was the first year awareness was raised in Nigeria about rare diseases.
Having noted all these, it is expedient to pay maximum attention to people who have inappropriate physical and or mental behavior and show them you care as they might be suffering from any of the 7000 rare diseases.
Most rare diseases are mainly genetic disorders, which implies that they could happen to anyone. So a little empathy is not too much to show to those affected. Care is health. You might not be able to help alleviate any of their sufferings, but a smile and an encouraging hug goes a long way in boosting their emotional well being.
There might not be a cure yet for their disease but your genuine care might be a part of their healing process. Besides, alone they may be rare, but through love and support we can make them strong. Show some empathy, join us to spread awareness by telling the person beside you as we celebrate World Rare Disease Day 2018, and together let's make the world a better place.
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