Luce KUSEKE SONA
Drepagreffe
Experience of pain and of bone marrow transplant
Thursday, June 16th 19:05 - 19:35 UTC+2
From living with SCD to healing and passing on pain expertise.
After having won my fight against this disease after 30 years, I pass on my expertise on this extremely unknown pain using educational tools of my creation during training and therapeutic education workshops.
- communicate about this pain.
- make caregivers understand SCD pain.
- make caregivers aware of their own resources and the importance of using them occasionally.
I created an accompaniment for transplant recipients and also produced a series of illustrated books with the aim of making children understand their illness or disability and the importance of making it a strength.