Danielle Jam on Clubhouse

Bio

I am a child of God!!

I am a proud single parent, and being a mom is my greatest accomplishment! I live with Sickle Cell Anemia type SS, and J am an advocate for sickle cell as well. My advocacy for Sickle Cell Disease is very important to me because sickle cell is still not a top priority in healthcare or by the government (although it was recently slated to be), and we need so much more research and funding for research and treatments.
As an advocate, I have decided to take part in some clinical trials because those are very important to research for sickle cell. The latest trial that I’m taking part in is for a new medication to treat Sickle cell Disease; the trial medication has been approved by the FDA since Nov. 2019, and is now available for patients. The medication is called Adakveo, and being in the trial has given an edge- the medication has only been available on the market for 1yr, but I’ve been receiving it for 3yrs, with great success. Recently I was interviewed by the Oklahoma Medical Research Foundation, to share my story about living with sickle cell and my journey with Adakveo,
This article is one of a few, and it makes me very proud of the work I’m doing! If I can provide some hope and inspiration to my community of sickle cell warriors, then I’ll know that what I’m doing is not in vain.

The link below is for “Findings,” a health/medical magazine created by the Oklahoma Medical Research Foundation. In the Winter/Spring 2021 edition, is the cover story about my life with Sickle Cell Disease and my journey with receiving the Adakveo infusion. (Yes, that is me on the cover)!!

https://online.anyflip.com/eqfz/cgvt/mobile/index.html