Rare Disease Day

So today (or what would be the 29th, if it were a leap year), is rare diseases day, a day to raise awareness for all such conditions.

Personally, I have been lucky in the short time I have been aware of PoTS, although my GP was unaware of the condition, she admitted that, did some research between appointments, and referred me straight to a cardiologist, who have accepted me for an appointment.

However, I know not everyone is so lucky. Every time I open Twitter there is someone else who has been misdiagnosed, who has been told it’s all in their head, who’s had benefits they desperately need refused. Or people who’ve faced ableism from friends, family and others. Who are told they need to get on with it, stop being so negative.

This needs to change. Now.

If you do one thing today, take a minute to read through some of these links, educate yourselves, or those around you, and spare a thought for those fighting to be heard.

Rare Disease Day UK PoTS UK – The Mighty-Chronic IllnessRare Disease


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