Sicklekan Awareness Campaign
Donation protected
The SickleKan Community development group/charity’s mission is to give people with sickle cell a voice within the local and wider community. We are seeking crowdfunding to provide a much needed platform for sickle cell patients which will enable us to promote awareness of the condition from the perspective of the sufferers. As well as sharing our experiences and knowledge, we will offer essential advice and information to help people with sickle cell to understand the different forms of pain management, compare the impact of medication and negative side effects and explore treatment of the disease. Break the Silence, Speak Up, Sicklekan.
My Story…
Sicklekan is all about mine and others experiences living with sickle cell disease. Like many sufferers, I felt ashamed of my illness and often chose to deal with my sickle cell issues on my own. Between October 2015 and January 2016 I had four very serious crisis episodes which led me to be admitted into hospital. A crisis is a period of intense pain caused by the deformed sickle shaped red blood cells being unable to move freely through the veins. As they are unable to flow, they clog the veins and cause intense pain, with each episode being called a crisis. Pain is often treated by morphine, but a crisis can also cause serious issues with breathing, cause infections on the lungs, and people can struggle with breathing. Eye problems can also occur with vision being temporarily lost or blurred. The most serious crises can sadly lead to death.
After my latest periods of illness, I was left feeling dejected, down and hopeless, however, this is where I drew on the strength I had in reserve and realised that my suffering is typical of those around the world that have this illness. I could have ended up in lot worse health, or even dead, and I realised then that I’m fortunate to still be alive. At that point I decided to go about bringing awareness to the issue of sickle cell and to join with others to tell our stories – creating the Sicklekan movement. We aim to raise awareness globally, informing others on what they can do to live with their disease, providing information to sufferers to ensure that better treatment is made available to everyone that has sickle cell.
Why the need for crowdfunding?
Approximately 5% of the world’s population carries trait genes for haemoglobin disorders, mainly, sickle-cell disease and thalassaemia.
Sickle cell disease is also the fastest growing genetically inherited condition in the UK affecting over 1 in 2,000 births, with over 25,000 adults knowingly living with the condition in the UK. These figures don’t cater for those who don’t know that they have the full blown disease or are carriers of the trait itself, which can lead to the illness being passed on to their children without their knowledge.
Despite these numbers there is a clear lack of information and awareness about sickle cell within the local, wider, and global community, which often means many sickle cell patients are suffering - and in worse cases dying - in silence, continuing the cycle of ignorance and continued suffering.
How will your donation help?
Ultimately we would like to raise £70,000. It’s even hard typing that huge number – but we feel through utilising different avenues we can get there.
We have a range of targets along the way to our £70,000 target including using money raised to increase marketing and promotion through the development of materials, designing and delivering interactive school sessions, registering our logo and company legally, setting up a website and app, and ultimately setting up a centre in London for the purposes of supporting sufferers in the community. Our overview document “Sicklekan CIC” is available for email to all those that donate, or who want to know more about our short, medium and long term goals before they donate. We operate from a position of full transparency and are happy to answer all of your questions.
The SickleKan organisation will grow to provide an information-based haven for social interaction, activism and encouragement. Providing sickle cell sufferers with positive interventions/solutions which will also be directed towards family members who are impacted in social and emotional ways. Our initiative strives to reduce ignorance and common misconceptions to having sickle cell, which can only be achieved through education, awareness and advocacy.
I invite you to come on board and join us on this journey with the Sicklekan community. We’d really appreciate your help to get there.
Education + Awareness = Progress and Understanding
My Story…
Sicklekan is all about mine and others experiences living with sickle cell disease. Like many sufferers, I felt ashamed of my illness and often chose to deal with my sickle cell issues on my own. Between October 2015 and January 2016 I had four very serious crisis episodes which led me to be admitted into hospital. A crisis is a period of intense pain caused by the deformed sickle shaped red blood cells being unable to move freely through the veins. As they are unable to flow, they clog the veins and cause intense pain, with each episode being called a crisis. Pain is often treated by morphine, but a crisis can also cause serious issues with breathing, cause infections on the lungs, and people can struggle with breathing. Eye problems can also occur with vision being temporarily lost or blurred. The most serious crises can sadly lead to death.
After my latest periods of illness, I was left feeling dejected, down and hopeless, however, this is where I drew on the strength I had in reserve and realised that my suffering is typical of those around the world that have this illness. I could have ended up in lot worse health, or even dead, and I realised then that I’m fortunate to still be alive. At that point I decided to go about bringing awareness to the issue of sickle cell and to join with others to tell our stories – creating the Sicklekan movement. We aim to raise awareness globally, informing others on what they can do to live with their disease, providing information to sufferers to ensure that better treatment is made available to everyone that has sickle cell.
Why the need for crowdfunding?
Approximately 5% of the world’s population carries trait genes for haemoglobin disorders, mainly, sickle-cell disease and thalassaemia.
Sickle cell disease is also the fastest growing genetically inherited condition in the UK affecting over 1 in 2,000 births, with over 25,000 adults knowingly living with the condition in the UK. These figures don’t cater for those who don’t know that they have the full blown disease or are carriers of the trait itself, which can lead to the illness being passed on to their children without their knowledge.
Despite these numbers there is a clear lack of information and awareness about sickle cell within the local, wider, and global community, which often means many sickle cell patients are suffering - and in worse cases dying - in silence, continuing the cycle of ignorance and continued suffering.
How will your donation help?
Ultimately we would like to raise £70,000. It’s even hard typing that huge number – but we feel through utilising different avenues we can get there.
We have a range of targets along the way to our £70,000 target including using money raised to increase marketing and promotion through the development of materials, designing and delivering interactive school sessions, registering our logo and company legally, setting up a website and app, and ultimately setting up a centre in London for the purposes of supporting sufferers in the community. Our overview document “Sicklekan CIC” is available for email to all those that donate, or who want to know more about our short, medium and long term goals before they donate. We operate from a position of full transparency and are happy to answer all of your questions.
The SickleKan organisation will grow to provide an information-based haven for social interaction, activism and encouragement. Providing sickle cell sufferers with positive interventions/solutions which will also be directed towards family members who are impacted in social and emotional ways. Our initiative strives to reduce ignorance and common misconceptions to having sickle cell, which can only be achieved through education, awareness and advocacy.
I invite you to come on board and join us on this journey with the Sicklekan community. We’d really appreciate your help to get there.
Education + Awareness = Progress and Understanding
Organizer
Kenny Bsc G Salami
Organizer
