Bone Marrow Transplantation & Sickle Cell Foundation Clinic

Do you know that the optimal health care provision for children with this disease requires a holistic approach involving highly trained, committed and motivated health professionals?

Please Pay Attention to This and Read on!

What is Sickle Cell Disease?

Sickle Cell Disease (SCD) is a chronic inherited blood disorder which can cause severe pain, stroke, organ failure, and other complications including death. This blood disease which is due to faulty red blood cell functions, affects millions of people worldwide and is a most common life-threatening non-communicable disease in children in Africa, where most of the affected children die before adolescence.

What is the Impact on Quality of Life of SCD patients?

Morbidity and mortality rates are particularly high amongst children with SCD. It is characterized by acute clinical symptoms, such as severe pain, acute thoracic syndrome and chronic signs, as it affects organs and systems, compels the SCD carriers to frequently seek emergency medical services. Thus, coping with this disease is very challenging in equal measure for children and adolescents and their parents or care givers.

There is abundant evidence in the literature that the condition leads to apprehension, difficulty in fulfilling personal and family responsibility, financial burdens, and diminished cognition in the SCD population.

SCD patients require immense attention and dedication. Since the immediate family is their primary support, family routines are often affected and so are their financial fortunes as the primary care giver may not be able to perform regular work. This is aggravated by feelings of guilt, anxiety and depression associated with the hereditary aspect of the disease, repeated demands for emergency medical follow-ups and the social and financial demands posed by this disease. Therefore, the caregiver's well-being is easily affected by the dependents’ ailment.

There is a paucity of comprehensive study of the impact of this ailment on quality of life in Ghana and the sub-region. We believe that, a more enduring strategy to deal effectively with the condition and its prevalence is a holistic multi-professional and multi-sectoral approach based on in-depth and ongoing research. This is therefore one of the primary goals of our foundation: to blaze the trail for comprehensive ongoing research into SCD and other blood cell deformities.

Despite this lack, we can conclude from open source information and our interactions that, SCD patients cannot be regular at school and that even if they were, their performance is severely affected by psychological factors and physical pain. This challenge is further aggravated by inaccurate public perceptions and misunderstanding of the symptoms of the disease.

Unfortunately, too, there is evidence that many healthcare providers are less familiar with SCD patients and might tend to underestimate the impact of SCD on the quality of life of an individual with SCD due to insufficient knowledge of the severity of SCD and the disease in general.

There is therefore a great need for public education on the disease. This education and the resulting positive interactions with carriers can greatly improve their psychological burden. This calls public awareness interventions and for specialist training in SCD management. These two aspects are firmly engrained in the overall purpose and strategy of our Foundation.

In Ghana, as in most parts of tropical Africa, persons living with the condition have limited access to quality clinical, health, educational, social and psychological care. This is even more acute with children. Despite this prevalence and well-known effects, SCD lacks the desired level of public policy recognition as a public health problem. This has affected the promulgation of appropriate holistic interventions to manage the condition and its impact.

Since appropriate treatment for SCD requires a holistic approach involving a variety of well-trained professionals, as well as a well-defined system of social support, healing begins when the complete range of interventions are in place and easily accessible to persons living with the condition. This argues strongly for the need to improve healthcare and social services for patients and families and thus improve the quality of life of SCD patients.

This is the motivation for BMTG and SCAF. We aim at adopting an affordable intermediate strategy that could be the model for the development of the complete range of services in both Ghana and other African countries for the treatment and management of SCD.

Now you can pioneer a new era in the fight against preventable deaths related to SCD especially among children in Ghana and other sub-Saharan countries. You can help in the prevention, early diagnosis, treatment and cure of these transplantable disorders.

With your financial support, you will be safeguarding the health and well-being of both born and unborn children inheriting this disease in Ghana and other sub-Saharan countries. Your generosity will be a beacon of hope to the children living in Africa.

Please make your donation today! And help the millions of poor innocent children and their families live to see a better future.