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Sickle Cell Disease: Invisible and Unpredictable

Sickle Cell Disease: Invisible and Unpredictable

FromPatient Stories with Grey Genetics


Sickle Cell Disease: Invisible and Unpredictable

FromPatient Stories with Grey Genetics

ratings:
Length:
73 minutes
Released:
Sep 25, 2018
Format:
Podcast episode

Description

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


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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.
Released:
Sep 25, 2018
Format:
Podcast episode

Titles in the series (92)

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