Ep 56 Sickle Cell Disease: Invisible Illness, Enduring Strength

This Podcast Will Kill You

Exactly Right and iHeartPodcasts

Health & Fitness, Science

4.8 • 17.7K Ratings

🗓️ 18 August 2020

⏱️ 121 minutes

🔗️ Recording | iTunes | RSS

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Summary

Neglected and ignored by the medical establishment throughout most of its history, sickle cell disease remains one of the most common (and commonly misunderstood) genetic conditions in the world. In this episode, we break down the myriad effects that one nucleotide substitution can have on the human body and discuss the basics of what it means when blood cells sickle. Continuing with the theme of the seen and unseen, we then turn to the history of sickle cell disease, a history of long-standing injustice and the unending fight to raise awareness and provide support for those impacted by the condition. And as always, we wrap up with a discussion on the current global status of sickle cell disease and some exciting new treatment options on the horizon. We are so honored and thrilled to be joined this episode by not one, not two, but three incredible guests! You’ll hear first from Marsha Howe and Sharif Tusuubira, who share with us some of their firsthand experiences living with sickle cell disease. And then in our current status section, Dr. Megan Hochstrasser from the Innovative Genomics Institute walks us through the mind-blowing genome editing approaches being used to treat genetic conditions such as sickle cell disease. You can follow Marsha on her website for her non-profit organization and blog “My Life With Sickle Cell” as well as through her social media channels: Twitter: @MarshaMLWSC, Instagram: @marsha_h181, Facebook: Marsha Howe. And make sure to check out B Positive Choir too! Twitter: @bpositivechoir and Instagram: @bpositivechoir. Learn more about Sharif Tusuubira’s amazing advocacy efforts on his website and through his social media channels: Twitter: @tkksharif, Instagram: @tkksharif, Facebook: Sharif Kiragga Tusuubira. You can also watch his 2017 talk in Washington, DC as a Mandela Washington Fellow. And to learn more about the futuristic-sounding research being done at the Innovative Genomics Institute (including using CRISPR to develop a faster, cheaper coronavirus test!), you can follow Megan (@thecrispress) and IGI (@igisci) on Twitter, or head to their website.

Transcript

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0:00.0	This is exactly right.
0:03.4	This is Justin from Generation Y and we're doing a four-part series unraveling the story
0:11.2	of Khalif Browder, a young boy falsely accused of stealing a backpack and held at Rikers Island
0:16.6	for three years without trial.
0:18.7	This story is about a young life caught in the middle of the justice system, listen to
0:23.0	Generation Y on Amazon Music or wherever you get your podcasts.
0:27.9	My name's Marsha.
0:29.8	I live in the UK as you can tell by my accent.
0:34.6	And I've had sickle cell for the longest time I can remember.
0:41.5	My parents found out when I was about six years old, my mum knew she had the trait but
0:50.1	my dad didn't know that he carried the trait.
0:53.4	My older sister was born and she just had a trait so my mum was like, okay fine, she
1:00.6	had got that from me.
1:02.6	But when I came about, I was born with a neighbor, sort of Gilness and Top of Sickle cell which
1:08.7	was called B6 deficiency.
1:11.2	So it kind of must be sickle cell.
1:15.1	So over the many years growing up I was like becoming sick, they couldn't quite work out.
1:21.4	And then when my younger sister was born they said, you know, let's retest the sickle
1:25.4	cell and that's when they found out that I had the full-blown disease.
1:32.3	I kind of understood I had an illness much later on and I would say, well I was about nine,
1:41.9	eight or nine.
1:43.1	Yes, I went to hospital appointments prior to that but it just didn't really sound
	...

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