It was exactly a year ago, today that I was in Pfizer's headquarters in Tadworth with the big wigs of the pharmaceutical industry, my young student friend, Clara whom I mentor, and who also lives with sickle cell and John James, CEO Sickle cell Society.
We were educating and representing the sickle community in the recognition of World Rare Disease Day. There are over 6,000 rare diseases in the world and quite a number of rare diseases are still formally or clinically undiagnosed.
Each year the World Health Organisation and other global health agencies celebrate rare disease day to raise awareness of some of these rare conditions.
Sickle cell is still classified as a rare disease in the U.K. simply because it is known to be affecting 15,000 people across the U.K. Internationally and nationally, the numbers are relatively low compared to conditions such as cancers and diabetes. It may arguably be the reason why sickle patients are known to be experiencing inequalities in the health and social care system because of the (in) significance of the numbers affected nationally.
Numbers is what classifies a condition as a rare disease. However, records of people identified to be living with the sickle trait in the U.K. is almost 600,000 and counting each year. The question is at what point does the most inherited genetic condition in the U.K become 'less rare'.
I think after Germany and France, the U.K. is the next highest country in mainland Europe to have patients living with sickle cell.
Nigeria latterly remains the highest numbers of people living with sickle cell globally - with a breaking number of around 1.5 million people with the condition and 115.000 sickle babies continue to be born each year.
20% of the entire population have the trait. These numbers are frightening and the mortality rates are terribly poor compared to mortality rates in the U.K and the U.S.
Yet the awareness is almost non existent in Africa and remains largely so globally.
Being a British born Nigerian, I marvel at the dichotomy of what seems to be considered a rare disease in the UK and on the other hand, glaringly so incredibly stark with shocking figures in Nigeria - and I always wonder when I can get the strength to start doing some significant work there.
Today, I reached out to my friends with other rare diseases such as thalassemia, chronic pain, blue diaper syndrome, endometriosis, rare cancers to tell them they are not alone in this. Together we hugely remain some of the toughest cookies in the world!
Here is to everyone with a rare disease like myself most especially my sickle cell warriors. Happy Rare Disease Day!
Hope you also got to have some pancakes? Why not? I am having some, Its Mardi Gras.
Written Feb, 28, 2016