Sickle Cell Disease: Invisible and Unpredictable

An episode of the Patient Stories with Grey Genetics podcast, hosted by Grey Genetics, titled "Sickle Cell Disease: Invisible and Unpredictable" was published on September 25, 2018 and runs 72 minutes.

September 25, 2018 ·72m · Patient Stories with Grey Genetics

Summary

Mary Adeturinmo is a 25-year-old University graduate who studied Architecture. She also has Sickle Cell Disease. Due to health challenges, she has spent a lot of time in recovery as well as promoting and raising awareness for Sickle Cell Disease. She is part of the B Positive Choir which raises awareness about the importance of blood donations as well as Sickle Cell Disease. The B Positive Choir was a finalist on Britain's Got Talent which helped spread their message to a wider audience. Mary also has a YouTube channel where she speaks on different issues she faces with this genetically inherited condition. Story Reference Points: Growing up with Sickle Cell Disease @ 6:48 Living with Sickle Cell Disease at University outside of London @ 12:14 Living with Sickle Cell Disease and chronic pain as a young adult @ 20:32 Joining the B Positive Choir and encouraging blood donations @ 29:34 New Standards for Clinical Care of Adults with Sickle Cell Disease in the UK @ 38:16 The value of collaborative, empathic care @ 43:53 Social challenges of living with an invisible condition @ 47:58 Sickle Cell and Social Media @ 54:06 Knowing your carrier status and dating with Sickle Cell Disease @ 1:04 Links and Resources The B Positive Choir on Britain’s Got Talent! Mary on Instagram: @professionalpatient25 Mary on Twitter: @profeshpatient Mary’s YouTube Channel Red Cells R Us Facebook Group UK Resources: Sickle Cell Society NHS Blood Donation US Resources: Sickle Cell Disease Association of America Find a place to donate blood near you in the U.S.! Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. Choose from our growing Network of Genetic Counselors. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.

Episode Description