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Wesly Marcena – Article and Interview

07 March 2018
Wesly Marcena
NCD Alliance

Two years ago, the RHD Action team told the stories of two young men, including Wesly Marcena, who lives near Port-au-Prince in Haiti.
When he was thirteen years old, Wesly became ill with acute rheumatic fever (ARF), which caused serious damage to his heart valves. In 2015, his aunt brought him to be examined by the Haiti Cardiac Alliance, where a cardiologist informed him that he had an advanced form of rheumatic heart disease (RHD).
Despite the advanced stage of his RHD, the Haiti Cardiac Alliance began to look for a hospital abroad that would be willing to donate his heart surgery. After multiple reviews, Wesly was admitted for surgery at Health City in the Cayman Islands. Fortunately, the operation was a success.
Two years on, Wesly is in good health. He hopes to engage in advocacy work to help inform others about rheumatic heart disease, especially those living with this disease.
We had the opportunity to meet Wesly in Geneva during his participation in an NCD Alliance workshop ‘Our Views, Our Voices’, which aims to meaningfully involve people living with NCDs (non-communicable diseases) in the global response to these diseases.

We discussed his diagnosis, how he lives with and manages his RHD, and his hopes for the future.
How did you find the workshop and your visit to Geneva? 
The workshop was extremely interesting – I spoke about my disease and my experiences. Geneva was wonderful, it’s a beautiful city. We visited the Art & History Museum of Geneva, the Jet d’Eau and the botanical gardens. 

Could you tell us about when you were diagnosed with rheumatic heart disease (RHD)?
Of course – the doctor told me around 2009. At the time I had a lot of symptoms: I would cough a lot, and I always had a fever. 

I wasn’t able to walk or go to school. However now, since my surgery, I feel like I’m living a real life again. 

What do you need to do to manage your RHD? 
Each month, I go to the Kay Mackenson Clinic for a health check-up, where I see the doctor for a consultation. I receive a lot of support from the Haiti Cardiac Alliance – I would advise anyone in Haiti who has received a diagnosis with rheumatic heart disease to contact them to find a solution. 

What do you think needs to be done to improve the treatment of RHD in Haiti? 
The majority of people who need an operation still go abroad – I think we need more technologies, medicines, consultations, and hospitals to help treat and manage RHD.  

Have you now returned to school to finish your studies? 
Yes, I will finish next year in July – I hope to study civil engineering at university.