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CEO Update: From the lovely Donna Wicks…

Posted By HMSA Social Media Coordinator, November 9, 2017

I can’t believe that it has been a month since our last e-news and in that edition, I was talking about the joint HMSA and EDS UK conference taking place a few days later! For those of you who couldn’t attend this occasion, the whole event was a huge success and feedback has been extremely positive (more formal feedback requests are being emailed to delegates this week, please do reply!)

All the speakers presented very interesting sessions, which led to thoughtful discussions and highlighted areas which delegates felt they could take away to share with their own professionals, families and friends. All main plenary sessions were recorded and will be available on both charities websites in a few weeks time. We will announce on social media when they are available.

This was the first time both charities had an opportunity to work in collaboration. From my point of view, it was an honour to work with Kay Julier (EDS UK’s CEO) and the EDS UK team as a whole. I would also like to thank the HMSA staff and volunteers, who worked tirelessly throughout the event. We couldn’t have done it without you! Due to space restrictions, I will discuss the weekend in more detail in the HMSA Journal next month.

On the evening of Saturday 14th Oct was the concluding fundraising event for Keith Diaper (Ironcause).

It was a privilege to drop in on the evening event and to see how many people had turned out to support Keith and his wife Pippa. Keith has raised over £5000 for the HMSA. But perhaps more importantly he has raised the profile of the charity and the conditions it supports. We know that it takes over 55% of our people ten years plus to gain a correct diagnosis. This 10 year journey sees this (our!) population dismissed by medical professionals, who have no understanding or little knowledge, of what can be complex and multi-systemic conditions. Delays in diagnosis can lead to a negative impact on education or employment, family and friend relationships, and more potential for disability. Patients are often labelled as neurotic or having psychosomatic issues. Depression and anxiety is high for these people for a whole host of valid reasons and certainly it isn’t helped by repeatedly being told there is nothing wrong with you, yet you experience high levels of persistent pain and chronic fatigue, dislocations and soft tissue injuries, gastrointestinal and autonomic dysfunction symptoms etc.

Keith undertook 52 mid-triathalons over a 26 week period. He completed a whopping 3655 miles and he is still standing! We are very grateful to Keith for his hard work and to Pippa for the continued support she provided to the cause. A special thank you to their lovely daughter, Isabella, who gave up 26 weekends of ‘Daddy time’. I have a sneaky suspicion that this little lady is aiming to take up her Dad’s sport!

The money Keith has raised will go towards our information production and will form part of a campaign we are running from the end of November. The ‘Giving GPs the Tools’ campaign will allow us to send each GP practice in the UK a package of information on the conditions we support, along the following lines;

  • the different hypermobility related syndromes/disorders,
  • when to refer,
  • when they can make diagnosis themselves,
  • signposting information for patients to the HMSA,
  • accessing HMSA professional resources,
  • accessing our training courses for professionals,
  • accessing The Kent Model,
  • accessing the professional network in their area.

So instead of sending Christmas cards to the HMSA, family and friends, why not save up and contribute to the campaign when it is live at the end of November?

I know Keith and Pippa intend to keep raising awareness of both the HMSA and the conditions we support in the future. And I am looking forward to meeting them both again soon.
Join the HMSA, Keith and Pippa, and those who have already donated and support the ‘Giving GPs the Tools’ campaign. It will make a difference to those of you already diagnosed and those who remain undiagnosed today!

If you wish wish to donate now, Just text 70070 HMSA13 £5 or £10

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