Brilliant meeting held on Saturday 23rd November by SEDS and EDS UK with a guest speaker from POTS UK. There were many discussions plus Michaela the speaker told of her daughters journey with POTS.
Take Away 1
The question was asked how to start on the journey to get a POTS diagnosis.
From her experience Michaela suggested -
(Remember this was a suggestion from experience and may not be right for everyone)
1.Get and NHS referral to see Dr N Gall Cardiology dept. Kings College Hospital - The waiting list is approximately a year.
2. If possible and funds allow it then get a private appt. to see him. To start the journey
3. Then get all tests done on NHS whilst waiting for NHS appt.
Take away 2
One of the questions from the members was what tips or tricks would she suggest.
To protect our already weakened teeth she suggested that we use High Fluoride content toothpaste. A member in the audience said that this can be prescribed by dentist
Take away 3
We all have anxiety and we should learn what the signs are and "push it down"
This resonated with the audience but the key thing was to recognise the signs
Hope this helps as this was a valuable meeting