Partner with us to offer patient-centred SCD care in rural Uganda
We are looking for funding, expertise and support to set up rural blood banks, improve supplies of affordable hydroxyurea treatment, train health workers and conduct local research.
The Challenge
Children living with sickle cell disease (SCD) and caregivers, often lack knowledge about its hereditary nature and treatment options.
They frequently experience delays in receiving blood transfusions, which are critical for managing their condition.
The availability of affordable treatments remain a significant barrier, with many families unable to access necessary medications.
The healthcare system in Uganda often fails to provide patient-centered care, leading to dissatisfaction among patients and caregivers.
They experience stigma and misinformation in their communities
Our services
Genetic counseling
We help families from sickle cell endemic communities to dispel fears, myths and gain courage to seek screening and care by offering them accurate and reassuring information through high quality gene counseling.
Screening
We help families at risk of sickle cell disease confirm their trait status by offering readily available screening with guaranteed timely results
Pain management
We help children and adolescents with sickle cell disease reduce crises and episodes of severe pain by providing affordable and accessible hydroxyurea treatment.
Mental health
We help children and carers affected by sickle cell disease to overcome mental ill health by offering quality 1-2-1 psychosocial talking therapy
Blood transfusion
We help children and adolescent living with SCD and anaemia complications to readily access blood transfusions which are affordable, timely, and patient-centred.
Healthcare Provider Training
We help primary healthcare providers to gain needed knowledge and skills to offer patient-centred SCD care through training, mentoring and a facilitating a community of practice.
Research
We help health authorities access evidence on the effectiveness of treatment interventions, evaluate healthcare delivery, and identify gaps in care by conducting local research.
FAQs
1. What is sickle cell disease, and how does it affect me and my family?
Sickle cell disease (SCD) is a hereditary condition that affects red blood cells, causing them to become rigid and shaped like a crescent (or “sickle”). This can lead to complications such as anaemia, pain crises, and organ damage. Since SCD is genetic, it’s important to understand how it can affect other members of your family and future generations. Genetic counselling can help you understand this better.
2. What are the treatment options available for managing SCD, and how can I access them?
The main treatments for SCD include pain management, blood transfusions, prophylactic treatments and Hydroxyurea to prevent SCD crises. Kabukye Trust provides support with affordable treatment options and access to necessary medications.
3. How can I cope with stigma and misinformation I experience due to my condition?
We offer 1-2-1 psychosocial talking therapies. By attending these programs or joining a support group, you can better understand your condition and how to advocate for yourself, while also helping others become more informed and compassionate.
4. How will my donation help children living with SCD in rural Uganda?
Your donation will directly support vital services such as genetic counseling, blood transfusions, and pain management for children and adolescents living with SCD in rural areas. It will also fund programs that educate families about the disease and reduce the stigma these children face, ultimately improving their quality of life.
5. What training opportunities does your organization offer to healthcare providers working with SCD patients?
We pair health service providers with specialist to mentor them in patient care strategies and effective management of complications like acute pain crises
6. What are the key challenges related to SCD in rural Kamuli, and how can collaboration help address them?
The major challenges include a lack of knowledge about the hereditary nature of SCD, delays in receiving critical blood transfusions, and stigma within the community. Collaboration with researchers like you can help us develop innovative solutions, improve healthcare delivery, and enhance community education on these issues.
7. What kind of research partnerships are you seeking to improve SCD care and treatment in the area?
We are interested in partnerships that focus on improving genetic screening, developing effective pain management strategies, and addressing social and systemic barriers to SCD care. Collaborative research can help us implement sustainable solutions that improve the lives of SCD patients in rural Uganda.
