Sickle Life is a Sickle Cell Disease advocacy group founded in 2013 by Dr. Sefakor Enam Bankas to champion the cause of persons living with sickle cell disease in Ghana through education and awareness creation about the condition.
Initial advocacy was through content generated and shared via a blog, www.sicklelife.wordpress.com. The objective of which was to expose readers to the reality of living with sickle cell disease in a credible and relatable manner through the experience of patient and doctor and empower them to make informed choices regarding sickle cell disease based on the knowledge acquired.
Sickle Life was registered as a Non-profit Organization in 2016 and has grown over the period to include several volunteers and writers, multiple social media accounts, participation in several sickle cell advocacy activities and a website, to consolidate all programs and activities.
MISSION and VISION:
To provide education and information about sickle cell disease to empower you make an informed life choice.
We envisage, through our activities, a time when sickle cell disease will be a topic of daily discussion and not an illness relegated to the background and for whom no one advocates but its own patients and their families.
We hope for a day, when persons living with sickle cell disease can openly speak about it without fear of discrimination.
With these we can be assured that one day, soon, people will be more concerned about their sickle cell status and will make life choices based on knowledge on the condition.
With these, the incidence of sickle cell disease in Ghana can be significantly reduced from its current 2% of annual births.
Live each day to the fullest. Make it count.
This is in recognition of the many struggles persons living with sickle cell disease undergo daily. It is a clarion call through our posts to our readers to make the best of their situation, despite the odds and enjoy each moment for its inherent beauty. It also encourages us to seek knowledge about sickle cell disease daily, as if each were our last.
The red stethoscope curved into an awareness ribbon is in recognition of the importance of awareness creation in sickle cell disease.
As medical doctors, stethoscopes are a basic part of our work. We use them daily to save lives. It is our hope that you will be encouraged to find the burgundy ribbon of sickle cell awareness in every part of your life and use it daily to save lives too.
Sickle cell awareness is not for a specific day or month, it is a way of life.
Whoever you are, pick up your burgundy ribbon and educate someone about sickle cell disease. Today.
WE ARE SICKLE LIFE.
WE ARE SICKLE CELL AWARENESS.
Sickle Life is an advocacy group which aims at providing education and information about sickle cell disease to empower you to make an informed life choice. Sickle Life achieves these through publications, programmes and advocacy. This editorial policy covers all content (text, images, videos etc) on www.sicklelife.org and www.sicklelife.wordpress.com.
Sickle Life is an independent organization. Our editorial team follows strict rules on plagiarism and maintains the integrity of the organization in all interactions. Decisions on content are independent and devoid of any external influences.
Topics on Sickle Life are chosen based on their relevance to our education and awareness creation efforts. They may be in response to frequently asked questions on our timelines or on a matter of public interest. The final decision on topics and content are however at the discretion of our editorial team.
2.0 Ethical Standards
2.1 All content published on this website by health personel conform to the rules and regulations of the Ghana Medical and Dental Council and other appropriate professional regulatory authorities.
2.2 No patient information shall be published without prior explicit consent from the patient or their care giver(s).
2.3 Patient information with consent so given shall be published for the sole purpose of education and awareness creation.
3.0 Conflict of interest:
Sickle Life welcomes sponsors, partners and commercial entities to support our projects. Where there is a conflict of interest on an article, it shall be declared.
4.0 My Sickle Life
My Sickle Life is a series on www.sicklelife.org that provides a platform for persons living with sickle cell disease, their relatives, friends and anybody who has experience with the sickle life to share it for the purposes of awareness creation and stigmatization.
4.1 Articles may be submitted via email to email@example.com.
4.2 Submission of an article does not guarantee its publication.
4.3 Offensive articles will not be published.
4.4 Publication of submitted articles may not be immediate as there may be earlier submissions.
4.5 The Sickle Life editorial team reserves the right to edit all submissions to suit our editorial policy.
4.6 Republication of any such article shall follow the rules of republication as outlined in section 8.2 of this policy.
Sickle Life welcomes feedback from our readers. Please be civil in your interactions. All rude, insulting and discriminatory comments shall be deleted by the editorial team. We acknowledge all comments and work toward responding to all enquiries. Interactions on www.sicklelife.org may be shared on Sickle Life social media accounts to reach other users. Please contact us at firstname.lastname@example.org if you have any concerns.
6. Sponsorship and Advertisement
Sickle Life welcomes sponsors, partners, and supporters to work with the organization or support specific projects. Sickle life provides a great platform for promotional articles and advertisement to the Sickle Cell community and the health conscious populace in Ghana.
All content on www.sicklelife.org is the exclusive copyright of Sickle Life and may be shared only for non-commercial purposes. No Sickle Life content may be reprinted, copied or electronically reproduced or used commercially without prior notification and consent of Sickle Life.
8.1 Sickle Life grants permission to share (retweet…) all posts in their original form directly from our website or social media accounts and from other platforms if originally shared from our website.
8.2. Patient consent onto other platforms cannot be inferred by virtue of their story being on www.sicklelife.org. Please accord them the respect of contacting us to seek permission on your behalf before you attempt republishing a patient’s story.
8.3 Sickle Life grants permission on request to reprint full articles for inclusion in publications used for advocacy and educational purposes as long as the content is unaltered in its entirety, credited to Sickle Life and refers the audience to Sickle Life for further information.
8.4 Crediting Sickle Life: Sickle Life shall be credited as follows:
Title and date of publication (via Sickle Life).
Sickle Life is an advocacy group which provides education and information about sickle cell disease to empower you make an informed life choice. www.sicklelife.org Facebook:Sickle Life Twitter:@Sickle_Life Instagram:@sickle_life Email:email@example.com
The advice and opinions expressed on www.sicklelife.org should not replace consulting health professionals for medical care. We strongly recommend asking your health care provider for clarification on issues raised on this platform.
Our content are for educational purposes only. No content on this site is or should be considered a medical diagnosis or treatment for any individual. Education and awareness creation cannot replace actual medical care.
Promptly seek medical care regarding any health condition you might have. Never delay seeking medical care because of any information you have read from www.sicklelife.org.
Team Sickle Life.
Please read this editorial policy in its entirety to ensure a mutually beneficial interaction.