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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.

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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