Met with Onyinye living with Lamellar ichthyosis

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Onyinye1Onyinye will make the fifth person living with the genetic condition, Lamellar ichthyosis that I am meeting without going public yet with this our innovative initiative.

As I listen to her very pathetic story, as I watch her fight tears, I cannot really understand or stop wondering why a particular area of health, is this neglected and totally underestimated. Much more seen as cosmetic, beauty and insensitively tagged ‘not life threatening’.

I was a bit surprised to hear from her that she has never met anyone with same condition as hers. You needed to see the excitement when i told her that I will be getting them to meet. Who says again that patient support groups is not one most of the most if not the most avenue to healing. We have come to be and will try our best to keep that smile on, on Onyinye so many other young and old Africans.

Watch out our Storybank page for Onyinye’s story and that of others starting first week of May 2017.

See some pics of me and Onyinye  Onyinye & Ogo2 Onyinye & Ogo3

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