Questions and answers

  1. How did you become involved with this organization?

I am a mother of four children, our first two children have rare conditions. Our son has an undiagnosed kidney condition and both of his kidneys failed when he was 6 years old. We were fortunate I was his match so I was able to donate one of my kidneys to him. Our daughter was diagnosed with  Morquio A (MPS IVA) when she was 3 years old. She is not on ERT due to lack of funding. She is 10 years old now and wheel chair bound since 2017. Due to the hardships I experienced with my children I decided to establish Botswana Organisation for Rare Diseases (BORDIS) in 2015 to serve other families.

 

  1. Can you tell me about the work your organization does and the advocacy or programs you run?

BORDIS is an umbrella organization for all rare diseases in Botswana. Our Vision is working towards having an environment where rare disease patients thrive. Our advocacy involves creating awareness, driving policy changes, ensuring access to quality healthcare and ensuring our patients and families access support they need for their daily living.

 

  1. What do you think your members would say is the best thing about your organization? 

Our patients and their families are mostly grateful for the support they get from BORDIS because through our work where possible they are able to achieve things they would not get anywhere else. The diagnosis for some families that had waited for years, getting treatment access to some, facilitating skills development for our healthcare professionals among others.

  1. What are your priorities ? 

My spiritual journey, personal growth and ensuring my mind is positively tuned to handle anything at any time and yes my kids. I stay up late at night looking into how I can make their lives better now and into the future. Because of my kids I do not allow myself to crumble and be swallowed by pity.

 

  1. What are the biggest challenges faced? 

Living in a country where very little is known about rare diseases, having a healthcare system that does not care much about our patients. The biggest blow when I felt and realised we and our children are treated like second class citizens even inferior to an illegal immigrant.

 

  1. Can you tell us about the people you work with?

I work with different people, patients, their families, health care professionals, people and organisations with an interest in rare diseases. All working in BORDIS volunteer their support as BORDIS has not yet reached a level of paying for these much needed support. I am very much grateful as we are working very hard to reach that level and we are much closer than when we started.

 

  1. You have recently joined the IMPSN Board, what are you hoping to achieve over the next 2 years?

I am looking forward to establishing MPS Africa so that the needs of our patients in the continent are well represented and met. This is very much important because what is known and works in other regions does not always address African issues. Another important thing I will pursue will be to strengthen collaborations among our health professions across the continent and make information sharing easier for the benefit of the patients.

 

  1. What do you enjoy doing outside of work?

I enjoy horse riding and swimming to calm my soul, I love travelling I can’t wait for the restrictions to be lifted so I can see places and people. I am an avid reader, anything that makes me a better person and a better mother.

 

  1. Who do you look up to for inspiration ?

God, he anchors my soul because most of the time my life seems like I’m standing on a sinking ship.

 

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