#nomakeupselfies for Cancer Research UK

In six days this UK born viral craze of #nomakeupselfies (women posting pictures of themselves with no make up) raised a staggering 8 million pounds for Cancer Research UK.

The idea behind this is that women post their #nomakeupselfies and men their #makeupselfies on social networking sites along with a caption saying that they donated to the charity by texting in which automatically donates £3 and then nominating their friends to do the same. The success of this trend will enable the charity to carry out 10 more clinical trials.

Viral sensations like this are great examples of not only the power of people on the internet but also the good spirit and kindhearted community that the online community can be.

Cancer Research, who did not initiate this campaign has said that the craze has led to a dramatic increase in the amount of donations that they receive.

Below are some examples of UK celebrities that got involved in this cause!

Left to right: Michelle Heaton, Holly Willoughby, Kym Marsh

Photograph taken from The Guardian

If you would like to donate then please give what you can by visiting the  Cancer Research UK Website.

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The Great Daffodil Appeal - Marie Curie Cancer Care

Having just lost a close family member to a battle with cancer, i'd like to dedicate this week's post to the support and care that the Marie Curie nurses provide for those with terminal illnesses. The nurses and staff at Marie Curie have continually helped us as a family throughout this difficult time and for them to continue to help many more families in this situation they have launched 'The Great Daffodil Appeal' this March.

The Great Daffodil Appeal

Where will the money go?

“We need to raise £10,000 every hour of every day to carry on our work…

Marie Curie has 2,000 nurses in the UK and last year they worked for 1,300,000 hours caring for terminally ill patients, including half of all cancer patients who die at home.

We also have nine hospices and are the biggest provider of hospice beds outside the NHS. In total, Marie Curie spends over £93 million a year on its charitable activities of providing care as well as on research and development. The figure is overwhelming, but so is the comfort that the money can provide.” – Marie Curie

Throughout the whole of March, Marie Curie are hosting the Great Daffodil Appeal whereby they are asking people to make a small donation to this cause and wear a daffodil to show their support. Since I've been wearing mine, I've started noticing so many other people out and about, on the high street and in the shops wearing theirs and showing their support. 

So if you see a collector with a bucket this March, please consider throwing some of your spare change in and start sporting the daffodil! So that you can help the nurses care for more people with terminal illnesses.

Thank you for your support. x

If you would like to make an online donation you can do so via the Marie Curie website.

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International #RareDiseaseDay!

The 28th February 2014 was international Rare Disease Day with over 70 countries across the world hosting events and activities to help raise awareness about rare and invisible diseases. So I thought i'd share some of the events with you! For a full list of events that went on and the success that they had please visit the Rare Disease Day Website.

Official Video

In the UK a variety of events took place on the day including a Coffee morning in London, organised by Advocacy for Neuroacanthocytosis; an information day at Birmingham's Queen Elizabeth hospital and  BABPA Charity Dinner in Leamington Spa, organised by NMC Midlands.

Meanwhile in Australia a Cinema Fundraiser Night happened in Tuggeranong hosted by International Society for Mannosidosis and Related Disease. There was also a picnic event in Melbourne and a Cocktail night in Bathurst, all to raise money and awareness for rare diseases!

As previously said, various events happened across the world including Jazz nights in Italy's capital city of Rome and High School assemblys in New Jersey, USA. So please do check out the website for a full list of all of the activities. BUT it doesn't end there. There are also more events to happen in the coming weeks and months in association with Rare Disease Day 2014 so make sure you keep an eye out for an upcoming event near you and keep spreading the word about rare diseases!

#RareDiseaseDay2014

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Message from the Blogger...

Message from the Blogger...

Dear Readers,

I've been meaning to write a post like this for a while giving you all an update about this blog and why I love writing it. As you can see by my old posts Snippet of my life - Part 1 and Snippet of my life - Part 2 (which I wrote back in 2011 around the time when I set this blog up - so please don't judge them) the part 3 update is well over due! So for that I apologise.

I guess it's taken me this long to write this because I don't usually like to upload posts about me and my life and instead would rather use this as a platform to share info that can help others. But thought considering I often ask you all to share your inspiring stories I should probably share more of mine. So here goes...

I started this blog back in 2011 at the age of 16 after being diagnosed with Ehlers Danlos Syndrome type 3. For those of you that don't know, EDS is currently an incurable hereditary condition in which the collagen in the body is too stretchy resulting in loose ligaments in the joints. This causes a great deal of pain as well as subluxations and dislocations of the joints. But for many sufferers such as myself, EDS is a physically invisible condition and so we look "normal".

I found it hard to comprehend how it could take 16 years for me to be diagnosed with a condition that I was born with and had pretty much always shown symptoms of. But finally after numerous misdiagnosis' and trips back and forth to various specialists I was relieved when I finally received the correct diagnosis.

I realised that it took this long as EDS is not only a rare condition but also an invisible one. Therefore many people with the condition, including myself appear completely fine. So, on one quiet Sunday evening back in 2011, I thought i'd set up a blog about EDS and other invisible conditions to help raise awareness, offer support to sufferers and educate others!

So here we are now - 3 years down the line. Showcasing a variety of posts from interviews, to helpful websites, video links to event pages and I've received almost 50,000 web page hits from you guys across the world, which for such a small blog about such a specific thing is crazy.

We're also on other social media including a Twitter page which has just reached over 1,000 followers.

I cannot thank you guys enough for your contributions, feedback and your interest in what I write about. This blog is going from strength to strength and I've learnt a lot along the way and there is still so much more content to come.

So in a nutshell, for me this blog is about sharing useful tips, links and helping someone else other than ourselves. There is always someone worse off. But I will try to give you more updates like this from time to 

time.

Abi x

For more info about my story, please check out my new website! 

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Rare Disease Day 2014!

In 4 weeks time on February 28th 2014 it is international rare disease day organised by Eurodis. In the run up to this day various events and promotional campaigns are taking place to help raise awareness about invisible conditions. To find out more about the day and to see the all the easy and simple ways that you can get involved just read the rest of this blog post and then visit their website.

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So what is Rare Disease Day?

"Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 70 countries participating in 2013. We hope many more will join in 2014. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide." - Rare Disease Day Website 

Below is  a message from the Rare Disease Day Ambassador - Sean Hepburn Ferrer. 

Interested in getting involved? Check out this video explaining the information pack available for download from the Rare Disease Day website.

On 28th Feb we shall feature a special blog post about the success of the day and hopefully share some of your stories about how you got involved. So please get in touch and let us know how you're planning to raise awareness!

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HandiNews International

This week's blog post features HandiNews International a useful website for people with all kinds of disabilities. We asked them a few questions about what HandiNews is all about so that we can share them with you!

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The Disabilities Meeting Place to Share and Help Each Other

www.handinewsinternational.com

What is HandiNews International?

HandiNews International is an online resource (website and social media) for ALL who are interested in disabilities, to share information and help each other.

How can HandiNews International help me and other disabled people?

HandiNews is a practical way for you to share your stories on our website and help each other - what you've accomplished, what you've learned, what resources you need, what services you might offer, and comment on what others have done. Everyday our Twitter platform brings you news about current disability issues, successes, and a lot more. Our tweets also tell you what's going on in our website - our viewers' latest stories, our featured news, our calendar of conferences, and links to useful resources.

What is HandiNews' aim?

HandiNews International's aim is to help us better our lives and the lives of each other, through sharing and caring, and to teach others to include and welcome us.

How can people like myself get involved with HandiNews International?

It's easy to get involved with HandiNews International. Just "follow" @HandiNews on Twitter, "friend" HandiNews International on Facebook, and bookmark our website. Then share your stories, information, resources, services, thoughts, comments and questions. We're inviting you! Help others, and help yourself!

Got an idea for a future post? Make sure you follow us on Twitter @hideandseekid, like our Facebook Page or email us - hideandseekid@hotmail.co.uk. The next post will go live on the blog on Friday 31st Jan. See you then!

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Happy New Year - from HideAndSeek!

Firstly, I'd like to wish you all a very happy new year and hope you've had a great start to 2014! Without trying to sound very cliché by saying 'New year, new me (blog)' I would like this year to be a new start for this blog...

I started this blog back in 2011 as a platform to reach out to those with invisible disabilities & to educate others about existing invisible conditions which most of us are unaware of.

When I was diagnosed with an incurable, inherited condition called Ehlers Danlos syndrome (I'd never heard of it either) after years of pain and numerous doctors visits, I hadn't received a correct diagnosis till the age of 16. I couldn't understand how it could take so long to be diagnosed with a condition that I was born with and why hadn't it been picked up sooner? I then realised it was because EDS is one of many invisible conditions that very little is known about.

Since starting this blog it has reached so many milestones, reaching a global audience with almost 45,000 hits and it has been inspiring for me to hear you share so many of your incredible stories and journeys about the conditions that you face in day to day life yet often get unnoticed.  I hold my hands up, I've promised numerous times to upload posts far more regularly than I have (slaps wrist) but as usual I got swept up in the business everyday life, starting back at uni, working etc etc - but that's enough of my excuses.

So here is my new year's resolution, which you can help me stick too... I will start off by posting on this blog every 2 weeks, on the 1st and 3rd Friday of each month starting today before hopefully starting to upload regular weekly posts. Baby steps.

The content I upload will not be all doom and gloom, instead I want to share inspiring stories, useful websites, video links etc about all kinds of invisible conditions. But to do this I need your help, for this blog to reach its full potential I want to try and reach out to as many sufferers of invisible conditions as possible to offer support by sharing helpful info with each other and act as an extra online support network.

So could you please share this post with as many people as possible as you never know who it might reach and help. Please can you email in any info, stories, video links, organisation names, anything at all which you think may be of use to others to hideandseekid@hotmail.co.uk so that I can feature them in future posts.

Also let me know what kind of posts would you be interested in reading about? Let me know either via email, twitter or FB. But for now I'll stop rambling, I'll just say that I believe...

Together we can help make the invisible, visible. 

 Abi x

 - Follow us on twitter and like our FB page

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