EDS sufferer to study medicine after long wait for correct diagnosis

[MeSci]

For years, Suffolk teenager Katy Shaw's symptoms were either misdiagnosed or not believed.

Eventually she was found to have a genetic disorder that caused constant dizziness, fainting and pain when standing. After a spell in hospital, she began her A-levels two months late and using a wheelchair. Here she shares her story and explains what heading to Cambridge to study medicine means to her.

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The main condition I have is Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder I was born with....

When I was about 14 years old, I began noticing that I felt dizzy and light-headed when I had to stand for more that a few minutes and would need to sit down a lot.

This was the beginning of a condition called Postural Tachycardia Syndrome (POTS), a common comorbidity of EDS.

More at https://www.bbc.co.uk/news/uk-england-suffolk-63033068

 

[Sid]

These sorts of articles only harm us further in the eyes of the medical profession. There is zero evidence that the sorts of symptoms POTS patients have are caused by a genetic form of EDS.

 

[RedFox]

Right. Anecdotally, EDS and POTS seem to co-occur but there's no science I know of to support it. And regardless, they're separate problems.

 

[Trish]

I wish her well with her studies. I don't know enough about the different genetic forms of EDS to understand whether there could be a link with POTS.

 

[JemPD]

I do worry about some of the things in the article, but I wish her well & am glad she's going on to study medicine, it takes so much courage to go public with anything.
Regardless of anything else she will make a compassionate & empathetic doctor, good luck to her

 

[Suffolkres]

We are dealing with the Teams referenced here for Katie ....and their attitude to CYP with ME is similar.....