Anne Welsh and her vision for Sickle Cell - Stopping the stigma of Sickle cell
World Sickle Cell Day Sunday 19th June 2016 #teamsicklecell
“We make a living by what we get, but we make a life by what we give.” – Winston Churchill.
I have always been passionate about sickle cell and its issues, especially in Africa. This sensitivity towards the issue goes back to since I can remember knowing I had the disease. It was a very special day for me, when the United Nations recognised sickle cell as a public health priority on the 19thof June 2008. I firmly believe that all sickle cell sufferers around the world need love and motivation.
World Sickle Cell Day has been chosen to celebrate every year, the disease in order to raise awareness around the world. What is sickle cell disease?
A child can get sickle cell anemia, when he/she inherits from each parent, two copies of a defective gene. As a result of this mutation, the red blood cells collapse and take a crescent moon - like shape. These cells are now called sickle cells, which clump together and are unable to carry oxygen throughout the body. This sickling of red blood cells also causes blockages of blood vessels. The reduced oxygen and hampered blood flow leads to chronic pain. Also the patients becomes more vulnerable to many infections.
For me, it's just such a wonderful initiative to bring the attention of this un-seen disease to the public and to the attention of health care authorities. Selfishly, as a sufferer, I just participate and work in areas that are very important to me, meaning bringing light to sickle cell disease through both online and offline avenues. Sickle cell disease is truly a global challenge and an international health problem.
Let us look at some key facts about the disease:
- 5% of the total world’s population carries trait genes for haemoglobin disorders like sickle cell disease.
- 300, 000 babies are born every year with severe haemoglobin disorder.90% of these die in first five years of their lives.
- Origin of SCD can be traced to 4 places in Africa. 25% of people of West and Central Africa have sickle cell trait with 1 – 2% of babies being born with SCD.
- In Nigeria, every year 45,000 – 90, 000 babies are born with SCD.
- It is predicted that by 2050, each year 400,000 babies would be born with SCD. With Nigeria and Congo contributing 140, 000 and 40, 000 respectively.
Sickle Cell Disease is no doubt, a Global Public Health Issue! Apart from many Middle East countries, India and Sri Lanka, have also been associated with the condition. The numbers are projected to increase globally with a gained momentum in global movement of people to developed countries. There is no cure for Sickle Cell Anaemia
The disease affects the psychological, physiological and social well-being of the individual. Despite of SDC being one of the most common rare disease, the associated health related stigma is never highlighted.
Prolonged hospitalisations for SCD individuals can be a cause of social deprivation. The situation becomes worse during adolescence. As the SCD young individuals also have late sex maturation, delayed growth, small body mass, many-a-times the mainstream society isolates them. The SCD adolescents may feel embarrassed and experience low self-esteem. Also SCD pain crises cannot be objectively scored and this lack of objective assessment causes delay and negatively affects this vulnerable population. Moreover, many clinicians may wrongfully see this to be a drug seeking behavior, which adds to the stigma. The stigma is also linked with racial stereotyping and mistrust leading to a problematic dialogue between the clinician and the sufferer. This negative pain management experience may find the sufferer being sucked into depression and anxiety. The frequent hospitalisation, loss of employment leads to low self-esteem and hopelessness and suicidal ideations.
As a sufferer of sickle cell disease, this is an issue, which I feel is very much neglected around the world. In this day and age there should be a cure and children should no longer die from this condition. Through talking about it and using my voice as experience and a platform, I am able to be part of a part of real, long-term solution for giving security, and wisdom, and knowledge and empowerment to sufferers.
This year, the world sickle cell day 2016, is another special day to celebrate breaking the silence of sickle cell and get more people to talk about the issues and how we can get more hospitals to understand our pain and an increased care for adult with sickle cell disease.
The theme this year #teamsicklecell
calls for voices of carer and patients to be heard by encouraging people to have the power to inspire, connect and unify people by telling our own story
"The goal is to really end the endless pain sufferers have to endure each time they have a sickle cell crises. Having more voices heard…"
For more information on my life with sickle cell visit my website www.anne-welsh.com
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