By: Michelle Van der Heiden
Introduction:
Galactosemia is a rare genetic disorder that affects the body’s ability to metabolize galactose, a sugar found in milk and other dairy products. In Zimbabwe, families dealing with galactosemia face unique challenges in managing the condition and accessing adequate support and healthcare. In this article, we will delve into the responses of two mothers who have babies with galactosemia, as they share their experiences through a questionnaire. Their insights shed light on the difficulties faced by families in Zimbabwe and provide valuable suggestions for improving awareness, support, and healthcare services for galactosemia.
Section 1: Demographic Information
The questionnaire begins by gathering demographic information about the galactosemia patients. The first mother reveals that her child is two years and some months old, while the second mother’s baby is 1 year and 5 months old. Both babies are female. The number of family members involved in their care varies, with the first mother having eight family members involved, and the second mother having three.
Section 2: Awareness and Diagnosis
When asked about their prior knowledge of galactosemia before diagnosis, both mothers responded negatively, indicating a lack of awareness about the condition. The diagnosis process differed for each baby. The first mother noticed symptoms when her child was nine months old, while the second mother observed symptoms no so long after birth, around 3-7days immunization, leading to a series of medical referrals and tests before galactosemia was confirmed. The latter mother experienced a series of misdiagnoses before the galactosemia was identified.
Both mothers confirm that healthcare professionals informed them about the condition at the time of diagnosis, indicating the importance of healthcare providers in educating families about galactosemia.
Section 3: Challenges and Support
Managing galactosemia poses significant challenges for both families. The first mother highlights delayed growth, speech problems, and various health issues such as eye cataracts and an enlarged liver. The second mother mentions dietary restrictions and the difficulties caregivers face in adhering to them. Additionally, she points out that her baby experienced liver and intestinal damage before diagnosis, contributing to her underweight condition.
When asked about the availability of support for galactosemia patients and their families in Zimbabwe, the first mother responds positively, while the second mother expresses a lack of sufficient support.
Both mothers confirm receiving education and guidance regarding the dietary management of galactosemia, which is crucial for the well-being of their babies. However, access to specialized medical care for galactosemia in their respective regions proves challenging for both families, as they have to travel to Harare Hospital, and incur huge financial costs and inconveniences.
Section 4: Awareness and Education
Raising awareness about galactosemia among family, friends, and the community presents difficulties for both mothers. The unfamiliarity of the condition and the necessity to avoid all dairy products make it challenging for others to grasp the dietary restrictions and implications.
When asked about support groups or organizations providing assistance and resources for families affected by galactosemia in Zimbabwe, both mothers indicate a lack of awareness, with only one organization, Child and Youth Care (CYC), being supportive.
In terms of improving awareness, support, and healthcare services for galactosemia in Zimbabwe, both mothers suggest measures such as the establishment of more support organizations, earlier diagnosis and treatment, funding for specialized care in all regions, enhanced awareness campaigns for the community and primary healthcare workers, and minimizing the need for families to travel long distances for minor issues.
Conclusion:
The responses from these two mothers provide valuable insights into the challenges faced by families dealing with galactosemia in Zimbabwe. Their experiences highlight the need for increased awareness, support, and healthcare services tailored to the specific needs of galactosemia patients and their families. By addressing these challenges and implementing the suggested measures, Zimbabwe can improve the quality of life for those affected by galactosemia, ensuring better support and understanding within the community and healthcare system.