Lavinia Ndinangoye (32) is a rheumatic heart disease RHD ambassador and a serving board member of Global ARCH, an international organisation that advocates for people living with heart conditions.

Originally from Okathitu-B in the Omusati region, she currently lives in Ondangwa, where she works as a nurse at the Oluno Correctional Facility.

A nurse, a correctional officer, an RHD ambassador, a musician (Sr. Lavinia Asher is her stage name), a mother and a board member for Global ARCH, here is her story.

I was diagnosed with RHD in 1998 and have been living with the condition since then. RHD is a condition where the heart valves are damaged by rheumatic fever. The damage happens as a result of an untreated or under-treated streptococcal infection such as a sore throat.

After completing my matric in 2005 at Gabriel Taapopi Senior Secondary School, I took up a nursing course at the National Health Training Centre and joined the nursing profession in 2007. In 2010, I underwent an open-heart surgery at the Panorama Medi Clinic, Cape Town, South Africa. The operation was a success – even though there may be a need for another in the near future.

I took up my career as a nurse in the health ministry and later applied for a nursing post within the Namibian Correctional Service in 2014. I took the challenge with no hope to be short-listed for that post because of my condition. I was called for the interview – and surprisingly, I made it.

In 2018, I was sent for the basic orientation-training course at Lucious Sumbwanyambe Mahoto Correctional Service training college, where I was limited from doing most of the physical activities that could strain the heart.

When I took up a singing career in 2018 (I have two albums, a single and currently busy with my next album), I felt there was a need to advocate or create awareness for RHD in my community.

So, I organised an RHD awareness campaign in May 2019 at the Oluno Community Hall, Ondangwa. My first Gospel album was launched at the event, with the assistance of my family and friends under God-Reign Gospel Production. The event was a success and I was inspired to do more.

In September of the same year, I took the campaign to Tsumeb, where I launched a campaign single, titled 'Get back your confidence', dedicated to all heart warriors around the globe, and an awareness message to healthcare providers to prevent rheumatic fever.

All events were hosted under the theme 'RHD is not disability'. This initiative has earned me an appointment as an RHD ambassador and a serving board member of the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH) early this year.

In my spare time, I enjoy writing my songs, gardening, decorating, cooking or baking, playing with my two wonderful children (a son and a daughter) and admiring the beauty of nature. I would like to get musical instruments for my production company, God-Reign Gospel Production, so I can be helpful to other upcoming artists. I love a live band when performing, because it makes you feel and enjoy the taste of the music.

My dream is to one day be assured that World Heart Day will be recognised in the health ministry’s health calendar – just like other chronic diseases such as HIV/AIDS, Malaria and TB. I desire to see the challenges of people living with a heart defect addressed, and an improved database-monitoring tool for their lifelong care.

People need to understand that RHD or any other heart disease can ruin people’s dreams/careers, and understand that RHD can be prevented and managed. The community needs to know that those who are living with RHD or any other heart defects have the right to live a normal life and not to be stigmatised or discriminated against.

I am grateful to the Namibia Correctional Service for employing me despite my condition, and they are not judgemental despite the working environment being so rough – and most of all, I appreciate their moral support. Working with people is not an easy task, worse if those people are offenders. I wish other organisations can learn from the good example set by them.

I wish to continue running the project, as it aims to encourage people living with RHD – not to allow the community to look down on them. They can effectively pursue their dreams with caution, and educate their families and communities about living positively with heart defects.

Everyone needs to better understand the condition of their loved ones in order to take necessary precautions, and should avoid victimising and stigmatising victims intentionally or unintentionally. It is worth concluding that RHD is preventable.

- laviniansadrag@gmail.com