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Professional Patient @ProfeshPatient

Grad. Student @royalcollegeof & @imperialcollege- Sickle Cell Ambassador @NHSBT- Designer

Joined July 2017
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Professional Patient@ProfeshPatient
15 Feb 2024
The next generation of SCW!!! It was a delight to work on this project and facilitate teaching Sickle Cell Research to these young people. Article: Imperial Sickle Cell Research Group welcomes Sickle Cell Warriors | Imperial News | Imperial College London imperial.ac.uk/news/251453/i…

Imperial’s Sickle Cell Research Group welcomes Sickle Cell Warriors | Imperial News | Imperial...

Researchers at Imperial hosted a visit for children living with Sickle Cell to tour Hammersmith Campus.

imperial.ac.uk
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Professional Patient retweeted
Black Things UK@Blackthingsuk
4 Nov 2024
Remembering Richard Okorogheye today on what would’ve been his 23rd Birthday. 🙏🏾❤️
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Need to be putting my phone on aeroplane mode in the night. To avoid noise/ news filtration. Never really helps.
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Soo many things are happening in the world. Both positive and negative. Someone once said 99% of the human experience is generally mundane to semi positive. (Not sure how true this assessment is but it’s a good lens to view things from)
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What is available. Blood transfusion, Exchange Blood transfusion, hydroxyurea, bone marrow transplant, (for special cases)…. I need to see if there is anything else… currently nothing else seems to be on my list.
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Once bitten, twice shy…. Who is really running to sign up for the third one. C̶r̶i̶z̶a̶n̶l̶i̶z̶u̶m̶a̶b̶, V̶o̶x̶e̶l̶o̶t̶o̶r̶, G̶e̶n̶e̶ T̶h̶e̶r̶a̶p̶y̶.
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I wonder what will happen to all the patients that were transitioned onto this? . And what about the psychological/ trust component to the withdrawal of therapies from the market.
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Once bitten, twice shy…. Who is really running to sign up for the third one. Crizanlizumab, Voxelotor, Gene Therapy.
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I cannot tell if this is real? Or just a joke at this point. I mean thank God they are considering patient safety. But the way these new treatments are promoted just to be pulled Extremely disappointing & problematic, let alone the damage/ mistrust this will inevitably lead to.
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I forgot how useful models can sometimes be to simplify the complexity. The trade of are not shown but sometimes they are made to strengthen a segment that has been weakened.
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Ingenious intervention to improve the ‘quality of waiting time’ to speak to administrative staff at the GP. Who really wants to be on the phone listening to waiting music with regular intervals of disruption that tells you to keep waiting.
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Audio descriptions: when did this start happening?
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DOAC- Dr Mike A very fun episode to watch
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When you fundamentally disagree with other people’s ideology but it’s based on lived experiences vs evidence based data or theoretical analysis…. High brow jargon. I may just have to keep strategising and testing the most effective rebuttals. How would you approach this dilemma?
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Set goals and leave room to reorientate. Keep chipping away at it until you reach your destination. Then set grander goals
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Health chats
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Yeah, go figure as if it was written on the tin! Honestly the way sensitive conversations are discussed. Hmmm
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My mind sometimes settles on the migration story of Sickle Cell. There is a deep and rich story that can be explored there.
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I tend to look at the world map and see the global impact of this condition and wonder if migration was not a variable, what would that narrative have been? Second generational consideration
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