Lucy McKay's Avatar

Lucy McKay

@loomoomahoo.bsky.social

CEO of Medics for Rare Disease. I want to see a world in which there is equitable healthcare for everyone. Trying to play my part in making this happen. Personal account. Views are my own. Trying not to burn out before #RareDiseaseDay

93 Followers  |  166 Following  |  131 Posts  |  Joined: 14.01.2025  |  1.9975

Latest posts by loomoomahoo.bsky.social on Bluesky

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Last week a UK Supreme Court Judge said that sex is binary & "the biological characteristics that make an individual a man or a woman...are assumed to be self-explanatory and to require no further explanation".

But what about Lexi who is intersex? Listen now rdpodcast4medics.buzzsprout.com

25.04.2025 10:00 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

that's not true now we understand gene expression more

17.04.2025 09:58 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

but people with sex chromosome trisomies can't reproduce

17.04.2025 09:57 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

i know you're right but i don't want it to be true. I want to live in a world with people who know more than me and can be trusted to give the most accurate information. Not in a world that rejects expertise or only accepts expertise that fits my current impression of the world

17.04.2025 09:57 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

so it's about penises?

16.04.2025 15:50 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

but what about on the biology bit?

16.04.2025 15:49 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

it makes me wonder who on earth they consulted with!?

16.04.2025 13:47 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

lots of things that we accept to be true were understood before genes were understood.

But whatever term is used for them - people exist who do not fit the physical characteristics or genetic characteristics of just one gender

16.04.2025 13:45 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

@supremecourt.uk if you are so certain on what biological female sex is please could you define it clearly.

I'm a doctor, have a BSc in Human Genetics and work in rare disease advocacy.

I cannot define biological sex into two categories without denying the existence of my intersex friends
#sex

16.04.2025 13:43 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

People can be intersex both in genetics and organs

16.04.2025 13:34 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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Police admit arrest of anti-monarchy heckler in Oxford was unlawful Symon Hill paid Β£2,500 by Thames Valley police over his arrest at proclamation of Charles III’s accession in 2022

While all eyes are on the USA remember this University Chaplain who was arrested for saying "who elected him?" about King Charles while walking home in Oxford... Citizens being arrested for questioning an unelected head of state πŸ€” www.theguardian.com/uk-news/2025...

11.03.2025 09:05 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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when it's your first French lesson after Rare Disease Day and you have to explain what you've been up to...

05.03.2025 20:43 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

i am from the uk

05.03.2025 20:42 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 3    πŸ“Œ 0

good thank you! how are you?

05.03.2025 17:29 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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Rare Disease Day 2025 Gallery - M4RD Thanks so much to everyone for getting involved with this year’s Rare Disease Day! It’s been amazing how many of you have shown your stripes and we can’t thank you […]

Have you ever felt unseen as a person impacted by rare disease? We hope this gallery featuring just some of the pictures from the NHS on Rare Disease Day will give you hope.

Listen - Learn - Advocate (repeat)
#ShowYourStripes #RareDisease #ThinkRare
www.m4rd.org/2025/03/04/r...

05.03.2025 17:24 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 1
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It's #RareDiseaseDay! 350 million+ people live worldwide with a rare condition. The majority start in childhood and families face terrible challenges due to ignorance and stigma. Break this pattern, #ShowYourStripes today in support of the Rare Community @medicsforrare.bsky.social

28.02.2025 11:46 β€” πŸ‘ 5    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

Just re-watched Series One of 'Am I Being Unreasonable'. It is some of the best TV I have ever watched. Ready to watch Series 2 now! πŸ˜† #BBC

26.02.2025 21:39 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Uncertainty - the cardinal symptom of #RareDisease #RareDisease101 by @medicsforrare.bsky.social #RareSky

25.02.2025 19:44 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Rare Disease 101 for Rare Disease Day 2025! Join Medics for Rare Disease and our fabulous guest speakers to celebrate Rare Disease Day with an updated, reimagined Rare Disease 101!

Only a few hours until my next speaking event - Rare Disease 101. It's online and international. There's still time to sign up! #RareDisease

www.eventbrite.co.uk/e/rare-disea...

25.02.2025 16:25 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Can we talk about the phrase "sicks kids"

I feel it's reductive & othering. Until recently I had never heard a scientist or clinician use this term. Now I can't go to a #raredisease conference without hearing researchers using it to explain the benefit of their research. Ok? Not ok? unsure?

24.02.2025 10:06 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I'm glad to hear you don't get intimidated by the dirty pigeons

24.02.2025 09:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

hi y'all!

24.02.2025 08:57 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

If you don't alreadt subscribe to Rare Revolution Magazine do it now. It's relevant to everyone because rare conditions affect 6% of the population and the chronic unmet needs of people has a broad impact on families and communities @rebecca-stewart.bsky.social rarerevolutionmagazine.com

24.02.2025 08:57 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Connecting the Dots: Oxford University Student Rare Disease Conference 2025 Join us at the Oxford University Student Rare Disease Conference 2025 and make a difference to the future of rare disease care!

Looking forward to speaking for @medicsforrare.bsky.social tomorrow. I will be presenting Rare Disease 101 at Magdalen College for this amazing event produced by medical students @ox.ac.uk #RareDiseaseDay www.eventbrite.co.uk/e/connecting...

22.02.2025 18:09 β€” πŸ‘ 5    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0

@medicsforrare.bsky.social

21.02.2025 11:51 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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An estimated 350 million people live with a rare condition worldwide. Regardless of where they live or which condition life can be very difficult due to a lack of awareness in society & healthcare. Break down ignorance & stigma - #ShowYourStripes this #RareDiseaseDay on Fri 28 Feb

21.02.2025 11:50 β€” πŸ‘ 5    πŸ” 3    πŸ’¬ 1    πŸ“Œ 0

you will never have to remember anything with your brain again. it's the best

21.02.2025 11:45 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Tick Tock Tick Tock. Only 10 days until #RareDiseaseDay so get your socks ready to #ShowYourStripes Show support of 350 million people living worldwide with a rare condition on 28th Feb @medicsforrare.bsky.social

18.02.2025 15:56 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 0    πŸ“Œ 1
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"CHI doesn’t define me, but it’s a big part of my lifeβ€”the reason behind my learning, developmental & medical challenges. But I am much more.."

πŸ’™ I am the beat of a drum
πŸ’™ I am the song that’s sung
πŸ’™ I am more than you can see
πŸ’™ I am me
More than a diagnosis
#MoreThanYouCanImagine
#RareDiseaseDay

17.02.2025 12:50 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

πŸ˜‚

13.02.2025 16:56 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

@loomoomahoo is following 20 prominent accounts