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Sunday, 5 May 2013



As May is EDS awareness Month every friday we will post a new blog post with updates about how people from across the world are helping to raise awareness! We'll hopefully be featuring all kinds of content from poems, to personal stories, events to images....

So if you're helping to raise awareness about EDS this month please what you're doing by sending us an email at hideandseekid@hotmail.co.uk

Also, Natalia Carrasco is helping to raise awareness by posting 31 facts about EDS for the 31 days in May. We'll be sharing these in all of our blog posts throughout the month. Here are the first 5!


Don't forget to subscribe to our future posts by selecting the subscribe option on the right hand side bar, follow us on twitter and like our Facebook page!

Oh, and our blog has now had over 30,000 hits so a massive thank you to all of you for your support in helping us to raise awareness about invisible conditions!

Saturday, 30 March 2013


Find Me Good Care ...



Find Me Good Care is a free online resource launched at the end of last year by the Social Care Institute for Excellence (SCIE) – a national charity established to improve care across the UK.


This week's post is dedicated to Find Me Good Care, a charity that aims to help people in their struggle to find the good quality care that their family member or indeed themselves may need. The first stumbling block is often finding where to start? It's especially hard if you don't know what sort of care and support is available or what they specifically need. Find Me Good Care was established to help people in these situations and includes advice and guidance on what to look for, how to pay, what you options are etc, as well as a local directory service where users can provide feedback.
The user friendly website www.findmegoodcare.co.uk can be tailored to individual needs; users can type in their postcode, specify what type of care they are looking for, and the results will return local services and council contacts. There is also lots of useful information for specific care needs.
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Ann Macfarlane OBE, leading Disability Rights and Equalities Consultant: “The main issue with finding and paying for care is that regardless of how much or how little funding you have available, you need good information and advice on spending it wisely. It’s taken me a long time to work out how the system works, which is why something like Find Me Good Care is really helpful for people. Many newly disabled people aren’t as aware of what their options are, and social care is just one of the systems that a person who requires support might need to understand.
Andrea Sutcliffe, Chief Executive of SCIE: “We know that the care system can be confusing and our research has confirmed that most people are unaware of their options - that’s why we’ve created this service. We have brought together comprehensive advice and guidance to help people take those all-important first steps in navigating the care and support system. 
Oh and finally, hope you all have a great Easter and stay tuned for next week's Sunday post!

Sunday, 10 March 2013

This is a post to remember the success of Rare Disease Day 2013 where over 70 countries across the world took part in a variety of ways to help raise awareness about rare diseases. This post will showcase some of the events and highlight the success of the day!

But first... 


So, what actually happened?

On 28th February, thousands of people across 71 countries took part in helping to raise awareness. Support grew across the globe as this was the largest number of countries participating throughout the 6 years that it has been running. A variety of events were held ranging from conferences, to radio shows, sponsored runs to cake sales! Everyone pulled together and worked as a team. The day got great media coverage across the globe and opened up a lot of people eyes to what rare and invisible conditions exist.Click the link here to see how each and every country played their part! 

Also, make sure you check out the Official Rare Disease Day 2013 video below:



If you didn't know about Rare Disease Day this year but wish you had got involved fear not as you can certainly get involved with Rare Disease Day 2014! Keep up to date on their twitter and facebook for the latest info as well as their website!

Next Week's Post will feature the UK service 'Find Me Good Care'.

Thursday, 28 February 2013


“Over 500,000 people currently lease a car through the Motability scheme. It enables you to turn your government-funded mobility allowance into a brand new Honda.” - Honda UK Website

Many disabled people face daily struggles and burdens with what lots of people class as everyday ordinary life. One of those struggles may be transportation. Those with either physical disabilities or invisible disabilities may need assistance or help with transport whilst maintaining their independence. This is where the Honda’s Motability scheme comes into play, offering people accommodating alternatives and alterations to their travel. There are a variety of adaptations that are available to assist all kinds of disabilities so visit the Honda site to find out more about Motability cars.

On a personal level, I know a few disabled people that make good use of the Motability scheme and what support it has to offer disabled drivers. For example, many disabled drivers may struggle with actually getting in to the car due to mobility reasons, similarly the operating of a standard vehicle may be difficult for them. As well, they may need some storage for extra equipment such as a wheelchair or crutches.

Many types of adaptations are available through Motability to make the driving and travelling experience as comfortable as possible for the disabled driver or passenger.  Generally, these adaptations fall under the three categories stated below.


Benefits of the Motability Scheme:

1.       Driving adaptations - Various controls can be installed to help improve the driving experience.  They make transportation easier for someone that may not have otherwise been able to drive independently. They vary from simple attachments which can be bolted onto your car to replacing all existing driving controls, with a system individually designed for you and include pedal modifications and steering aids.

2.       Stowage adaptations - These allow the disabled person to easily stow their wheelchair or scooter in the car and usually come in the form of either a hoist or rooftop storage.

3.       Access adaptations - These adaptations can be made to aid those that need help getting in and out of the car and range from a permanent swivel seat to an electronic person hoist. However, it is important to have an assessment for these first in order to ensure the motor best suits your needs.

Are you eligible?
If you’re interested and wondering whether you’re eligible for the scheme then check the Motability section of the Honda UK website for more information about what forms of benefits you receive to see if you qualify. Or visit your local Honda dealership as at least one trained Motability specialist is stationed at each dealership to help you and provide advice on which car suits you best.



In association with Honda.

Saturday, 9 February 2013



"February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries.
On and around this day hundreds of patient organisations from more than 60 countries and regions worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders”
Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!"Rare Disease Day 2013
There are so many ways you can get involved and help to raise awareness! Just click the link below to find out more about how you can get involved with the following activities:
  • Organising an Event
  • Share promotional material
  • Tell your story
  • Get active on Social Media (like us!)
  • + Many more ideas about supporting the campaign!



Friday, 25 January 2013




This is just a quick blog post about why this platform has been so quiet in recent months...

 Like many of you, my life has been hectic over the Christmas period! I recently started University, moved out of home for the first time and celebrated my 19th Birthday. However, with 2013 bringing in a new year, I aim to keep the weekly blog posts going for as long as possible and for as long as you guys want to read them!

There shall be new material every week about useful website for help coping with invisible conditions, individual personal stories, or just some amusing yet inspiring images and slogans! Thanks so much to everyone that has got in touch with some ideas so far about future blog posts and there are some great ideas in the pipeline.

However, I'm always after more suggestions. So if you have some information or know of a web link that you depend on and helps with your condition, get in touch via hideandseekid@hotmail.co.uk and I'll post it to share with others! Likewise, if you're after some further help feel free to email over a summary of what you're asking and we'll all see what we can do!

Thanks again for sticking with the blog, and for the great feedback it has had so far.

Remember to keep in touch on twitter: @hideandseekid and on facebook: HideAndSeek Disabilities

Next Blog Post: "Rare Disease Day 2013!" will be up soon!

Saturday, 12 January 2013


Hello everyone! First of all, i'd like to apologise for the significant lack of posts in recent months, the reasoning behind this shall all be explained in an upcoming blog post. However, we're back now with weekly content being uploaded!

That's right...
 a new blog post will be uploaded every friday 1pm UK time! 

I'm looking for your suggestions and contributions to be uploaded. Whether its a personal story about coping with the hectic Christmas period, some useful info you've recently come across or some inspiring and encouraging messages we'd love to hear from you!

Get in touch via email: hideandseekid@hotmail.co.uk or tweet us: @hideandseekid!

This is your chance to help us to reach out and raise awareness about invisible disabilities. 

Also, i'll be changing the layout of the blog so do let me know what you think!

Please share this blog post with your friends and family to let everyone know that we're back up and running, raising awareness about invisible disabilities.


Thank you.

Next Blog: "Why so quiet?" will be up on Friday 18th Jan!