Trinesha’s Story: For My Son



Trinesha is in her late 30s and is living with sickle cell disease (SCD). Trinesha has had a lonely journey with the disease. Though her brother has SCD as well, his symptoms are less severe, which makes Trinesha feel that he doesn’t understand her. Trinesha was raised by a single mom who had to work and take care of her children so Trinesha often spent nights at the hospital alone during pain crises.


Growing up, Trinesha would often miss school at least 3 days out of the month. Friends would never understand why she would sometimes have to cancel plans or why she wouldn’t have energy so she continued feeling alone. She describes her experiences as feeling stuck in a body that is too tired and pained to move, but with a brain that is energetic and just wants to go about doing life. 


Trinesha is a mother to 1 biological son and 3 stepkids. It was easy for her to hide her symptoms from her stepchildren because she could always send them back to their mom’s house, but with her son now, she always feels upset when she is experiencing SCD symptoms. She had a very difficult pregnancy and doctors wanted her to abort the child. She had to wait until after her pregnancy to be able to take hydroxyurea. She often feels like a disappointing parent because she doesn’t always have the energy to have fun and play with her son. Now that her son is getting older, she tries to explain her disease to him in ways that he’ll understand.


Now, Trinesha is on hydroxyurea and is doing really well! She hasn’t gone to the hospital in 3 years because of the treatment. Her son gives her the strength and motivation to push forward and keep fighting sickle cell disease. Trinesha also attends a monthly support group and has taken her friends and family to some of the meetings. Her support group meetings are focused on education, awareness, pain management, depression, etc. Trinesha also has attended sickle cell conferences for the last 4 years (and has even spoken at some previously) and that’s how she heard about Sanguine! Trinesha supports and participates in Sanguine studies because she also believes in a well-rounded approach to disease management. She believes that by making participation in research easier and more accessible, Sanguine is empowering patients to make a difference for their community. Trinesha is passionate about research and advancements in the sickle cell community because she knows that better, safer, and more effective treatments can be life-changing.


By Neelem Sheikh