A Note From Tom

I made this website so my sister could have something she could really focus on and tell what is a very complex story. I hope it is informative enough for friends and family to understand her condition. Over the past two years she has been remarkably strong. It still amazes me how strong spirited she can be despite not even being able to get down the stairs to socialize, cook her own food or have any independence at all.

Also there are very few articles in the media or online about SSCD. Most of what we have found out has taken a huge amount of time and research. I hope this platform will be useful for other SSCD sufferers who want to understand a case in more detail and see how Beth relates to them.

The toughest time was when we were unsure about what was even wrong with Beth. It is extremely frustrating when even the best specialists are saying they do not understand a condition. Numerous times we have had problems with the structure of the NHS – with a system with no accountability to the public it serves it makes it extremely difficult in rare cases such as Beth’s. Of course the staff we have met over this time have been exemplary.

One example out of many disappointments was Beth’s most recent appointment in Cambridge was cancelled. This was after Beth was already in Cambridge with my parents paying for accommodation. As there are so few consultants that deal with SSCD in the UK we then had to pay for a private appointment with the same consultant. Making the trip to Cambridge not a complete waste. I plan on writing more about our NHS experience in the future but for now let’s concentrate on gettingbethbetter!

I am organising numerous fundraisers throughout the summer and hope to raise funds to put towards increasing awareness for SSCD and to my sister’s further treatment in the states.

Please check out Beth’s Instagram to follow her journey and our Facebook page for regular updates.
Any enquiries please contact me via email at info@gettingbethbetter.com or Beth at bethanrye21@gmail.com

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