EDS sufferer to study medicine after long wait for correct diagnosis

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

 

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.

 

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.

 

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

 

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