What Personalised Medicine Feels Like: The Human Story Behind the Science

Yeah, I think it is important to acknowledge that research and the field of genetics and stuff is moving forward.

And so it is encouraging to hear that you feel like there's some more information sort of at your fingertips.

I think also just in the sort of place that we're living in and the generation that we're in everyone has knowledge like literally at the click of a button which I suppose can be good and bad in some ways but it's encouraging to hear that there is you know work being done and there is more available in terms of resources and you know knowledge generation and stuff like that Kate I'm interested to hear what your thoughts are on sort of know getting more knowledge and more information about something that's obviously so deeply personal to you do you feel like that's part of your journey as well

yeah so um with uh pots and hgds i actually started to suspect them that i had them because of a youtuber okay called uh jessica calgren fozard um she is a british lesbian who also has those uh conditions as well as there's another one um and i was just watching her because i just was like oh yay a queer person who likes fashion this is cool yeah and then um i she did a video about like What is POTS? And I was like, wait, I have all of those things.

And I did some research for like a GP and I found Dr. Anastasia Thompson, who is fantastic.

I adore her.

And she was the first person who like believed me.

And like when I had that appointment, like I could have cried.

I wanted to like hug her.

I was like, oh my God.

um because my best friend believed me and like my mom knew there was something going on obviously but she didn't like want me to be disabled um like but obviously you know you can't like wish things away and she has like um you know grown and changed her perspective and now she like defends me and

yeah she's great

um but yeah i mean in terms of research it is a bit trickier with my conditions they don't have a like blood test or like a thing that you can do that it's like definitive yeah it's more of a ruling out of other things and i mean with parts you can do the like tilt table test or like um the poor man's tilt table test where you lie down and they take your heart rate and then you stand up and they take your heart rate and if it increases by more than 30 beats per minute then you have it um provided you fit the other criteria um Yeah, and with HEDS, the other types of Ehlers-Danlos, those can be done with a genetic test.

But HEDS, they haven't figured out a way.

And that's part of the reason why I haven't had it diagnosed, because I just don't have the money to go to a bunch of specialists.

But everybody's like, you've got it.

Um, so yeah, but I mean, and I know that since COVID there has been more research in two parts because more people have it as like a long COVID thing.

Um, but yeah, the research is pretty lacking, especially since it does tend to impact people assigned female at birth more.

And we know how medicine works.

loves to do research on men more.

Yeah.

I mean, I also find comfort in seeing other people with my conditions, like Mark mentioned.

So through rare diseases, South Africa, there's, and dysautonomia, support maybe but they like have a group chat and um that has been just it's amazing um yeah i To have people who understand what you're going through is really, I think, important.

I can imagine that it would be.

And I think, sort of like we mentioned earlier, on receiving something that's sort of validated to you is incredibly important.