A look at Rare Diseases through Child and Youth Care

By Trudy Nyakambangwe

Child and Youth Care (CYC) is a Zimbabwean-based Private Voluntary Organisation (PVO) that empowers vulnerable and neglected children who are living with rare diseases. The target groups for the organisation are neglected groups of vulnerable children and young people, ranging from 0-24 years of age. The mission at CYC is to defend, champion and advance the interests of children living with rare diseases and their caregivers to improve their quality of life. This mission is part of a greater vision to empower children and youths globally through the provision of platforms that create equity, equal opportunities and universal inclusion. 

There are an estimated 6,000 rare diseases, with approximately 300 million people worldwide living with a rare disease most of which start in childhood. Rare diseases can be genetic and include rare cancers, infections and allergies (bacterial, viral, or caused by factors such as food poisoning or chemicals). These diseases are chronic, progressive, degenerative, and frequently life-threatening. In Zimbabwe, rare disease research is challenging due to a combination of low prevalence, inadequate diagnostic capacity, lack of comprehensive registries and the high cost of research. The total number of people living with rare diseases in Zimbabwe is unknown and the majority of people who have a rare disease are scattered across the country unaware. This is due to a lack of information about rare diseases especially in rural communities where they do not have the facilities to get an appropriate diagnosis. It is, therefore, difficult for them to receive quality health care and treatment, be represented during policy developments and be included in the community. 

Middle to low-income countries particularly in Africa has focused on preexisting infectious diseases in parallel to the emerging burden of non-communicable diseases as these countries transition epidemiologically. This heightens the challenges being faced by people living with rare diseases, clinicians and researchers as delayed or misdiagnosis can lead to physical, emotional and financial burdens placed upon the patients and their families. The lack of clinicians with expertise and knowledge on clinical guidelines often means that information regarding multidisciplinary care is often uncoordinated placing an additional burden on people living with a rare disease.

Children Living with Rare Diseases (CLWD) face challenges such as lack of access to appropriate diagnosis, social support, lifelong care, representation in policy developments, education (inaccessibility of facilities and non-adaptive teaching) as well as inclusion in communities. Consequently, all the aforementioned challenges tend to affect the whole family and cause overall increased isolation and impoverishment. Women with children living with a rare disease face more difficulties in providing care. The primary unpaid care role is most often assumed by women. The rest of the family, fathers and siblings also face challenges to access retention and the return to employment. As a population with increasing vulnerabilities, they are affected by stigma, discrimination and social marginalisation, within their social environment and in society at large. The paucity of knowledge and expertise on rare diseases and the lack of awareness of the challenges faced by CLWRD mean that they are psychologically, socially, culturally and economically vulnerable. 

As an organisation, we currently identify CLWRD and their families and offer psychosocial support, economic support in securing medication and promote the development of government implementation of rare disease friendly policies. We have short to medium term plans to spread our work towards the implementation of a rare diseases registry which will improve the accessibility of diagnosis, treatment and care for our beneficiaries. We intend to assist in lobbying for affordable medication, subsidised medical bills and identify patients interested in clinical trials through international networks. CYC has managed to develop six support groups to cater for these diseases through the assistance of Sally Mugabe Hospital (Harare Children’s Hospital). Through donations, we have managed to pay hospital bills for our beneficiaries as well as donate food hampers to 20 families of children living with rare diseases. 

We believe that every child deserves an opportunity to attend school and be educated as such, we are paying school fees, providing stationery and other educational needs to the most vulnerable children. Through our EduCare project, we have managed to send at least 30 children to school, these include children in the rural areas and urban areas.

Our Partners: 

We strategically partnered with a number of Accredited International and Local organisations to promote research and amplify the voice of people unmet needs; increase knowledge and education and foster meaningful collaborations that fuel progress.

  • National Organisation for Rare Disorder (NORD)
  • European Organisation for Rare Diseases (EURORDIS)
  • Rare Disease International (RDI)
  • Ministry of Health and Child Care (MoHCC)
  • Referral Hospitals
  • Caring and Living As Neighbors (CLAN) 
  • African Union (AU) 
  • Hereditary angioedema Zimbabwe (HAE-Zimbabwe) 

One of our upcoming events. 

Rare Disease Day 2021- 2022 Heroes Campaign –This campaign starts 100 days before Rare Disease Day Every year on the 28th of February. We celebrate everyone living with a rare disease on a global scale. The theme for Rare Disease Day 2022 will be ‘From misdiagnosis to diagnosis journey.’ Some of the activities to look out for on our social media platforms are a fun run/ walk and a special illumination of an iconic building that will be under the name “Light-Up Zimbabwe.”

Resources and contact information 

Address: 3 Sable Street Mandara, Harare, Zimbabwe, 

Contact number: +263 775407510 

Our website: www.cyc.org.zw

Our social media platforms

 Facebook- Child Youth Care Zimbabwe

 Instagram- @childyouthcarezim

 Twitter- @ChildYouthCareZ

Images from Child and Youth Care

Originally published in the 7th Ndeipi Magazine

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