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Welcome to the Blog!

Hi, I am Somaneh Bouba. I come from Mali and Senegal. I was a high-flying engineer and social entrepreneur working on my African Dream when I found myself having to stay in the USA with my wife and sons to receive life-saving heart treatment.

I am living with an advanced heart disease caused by a congenital heart defect. I lived with the risk of sudden cardiac arrest without being aware for a long time. Despite years of therapies, multiple events, milestones, locations… In 2017, I underwent open-heart surgery to implant an LVAD pump inside my heart. The LVAD pump is helping my heart function while I wait for a heart transplant.

Here, I share an unfiltered account of my lived experience with my illness and the support system that helps me live a healthy life quality, be successful, and even aspire to self-actualization. I also write on how I still have faith in life, hope for tomorrow, and dreams for the future.

I blog as a patient because I firmly believe it is critical that the patient’s point of view is made more relevant and informs the improvement of therapies and healthcare systems.

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The Boston Heart Walk is back, in person. For our 6th participation, we are looking to support the AHA raise funds and volunteering for Heart of a Giant Foundation Staff on the day at the Esplanade. Please consider joining Team Heart of a Giant and giving to the American Heart Association (AHA).
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