#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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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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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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The Jolt Trust Charity

If you read our inspiring guest blog posts from Emily Yates you'll be familiar with the charity organisation she mentioned called Jolt Trust. We're really interested in what this small charity offer to disabled people and what they have already achieved. So we'd like to share some more info about the Jolt Trust movement with you...

"Since 1983, the Journey of a Lifetime Trust (JoLt) has been making a positive, lasting difference to the lives of hundreds of disabled, ill, abused and neglected young people. JoLt is a small charity run on a totally voluntary basis by a group of ordinary people with families and careers. It was set up in 1983 to make a positive lasting difference to the lives of disabled, ill, neglected and abused young people.Every two years, we organise expeditions all over the world for groups of young people (from fourteen to twenty one years) with significant disadvantages. All long to travel to far-away places. JoLt makes their dreams come true." - JoLt Website

Sounds amazing right? Fancy getting involved?

Well there are many ways you could help to get involved with this charity and their work. First of all is by donating so that they can continue to offer these fantastic expeditions for the disabled youngsters in years to come. If you'd like more information about this please click here.

Or you could nominate a youngster to be considered for taking part in the 2014 expedition across Africa!

"We are busy planning our next journey for July / August 2014. We aim to travel from the heart of Africa to the Indian Ocean. We will start our travels in Zambia, before heading through Botswana, South Africa, Swaziland and arrive in Mozambique a month later. We will take in the mighty Zambezi River and Victoria Falls before entering Botswana, the gateway to the Okavango Delta. South African highlights include the world famous Kruger National Park and Blyde River Canyon. The Kingdom of Swaziland will be the location for a community project and some exciting trekking, before arriving on the beaches of Mozambique to complete our journey." - JoLt Website

For more information about how to nominate please click here!

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EDS Awareness Month - Week 1 - The Types of EDS

Our first #EDSawarenessmonth blog post is dedicated to the different types of EDS that people have. Although some are more common forms than others and many have overlapping symptoms and this is how the different types are considered and defined.

• Classical - the skin is stretchy, soft, fragile and elastic. The joints are loose and flexible.

• Hypermobility - the joints are noticeably loose, flexible and sometimes painful, particularly after exercise. Unlike with other types of EDS, the skin is virtually normal, except for easy bruising.

• Vascular - this is the most severe type, as it means organs and blood vessels can easily burst.

• Kyphoscoliotic - the spine is severely curved in childhood. 

• Arthrochalasia - this causes short stature, fragile skin and joints that easily dislocate.

• Dermatospraxis - the skin is doughy and wrinkly, and tends to sag and fold. This type is exceptionally rare, probably affecting fewer than five patients in the UK. 

• Periodontal - this form resembles classical EDS, but also causes very fragile gums.

Information taken from the NHS website.

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I know what you're asking now...

How can I get involved in helping to raise awareness about EDS?

Well first of all why not visit the Ehlers Danlos Support UK website and download their Awareness Month fundraising pack for some ideas.

Or alternatively send us your EDS stories and tell us how you're raising awareness and we'll feature it in one of our future blog posts. Email: hideandseekid@hotmail.co.uk. Next weeks post shall feature Jodie's Journey.

Here is how Natalia Carrasco is doing her bit, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for the first five facts:

Finally, on May 12th we shall be posting a special blog post dedicated to Fibromyalgia, a condition that a lot of EDS sufferers also have, to show our support for Fibromyalgia International Awareness Day! 

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Without A Diagnosis Documentary

With our technical issues sorted, our blog is back up and running with new posts up every Friday!

This week we have a special feature about Without A Diagnosis.

I know that many of you can relate to the uncertain scenario of not having a diagnosis for your condition (it took me 16 years to be diagnosed!). After frequent trips to the hospital either us or are loved ones are still left with questions unanswered about our unknown conditions. "Is there a cure?" "What can I do to help?" and most important of all.. "what is wrong with me?".

This documentary by Kat Williams showcases families in need and what help is available out there for them. Most importantly of all, it helps to raise awareness about invisible conditions and how important a diagnosis is when trying to cope and comprehend with your condition.

Now that's enough from me... I'll let the documentary do the talking...

Follow us on twitter: @hideandseekid

http://withoutadiagnosis.wordpress.com/

@withoutadiag 

http://swanuk.wordpress.com/

@swan_uk 

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Linky the EDS Horse!

A few weeks ago a competition took place for people to enter their designs of a horse to help raise awareness for a certain concept they believe in and the design of the winning horse will be on public display in Bristol for a few months to raise awareness. 

Once the entries were in, all people had to do was to vote on Facebook by liking the picture of the horse that they wanted to vote for.

The chosen design was ‘Linky’  the horse, designed and painted to help raise awareness about Ehlers Danlos Syndrome! 

Thanks to all those of you that voted for the design helping to make it become one of the most popular entries. Linky the Painted Pony will be unveiled in Cabot Circus, Bristol City Centre in mid July and will be on display to the public until September. Linky will help to raise awareness of EDS to thousands of shoppers over the summer.

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Invisible illness week 2012 - September 10th - 16th

About Invisible Illness Week 2012

September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers.

Below are some videos from the Invisible Illness week campaign

Stay tuned for many more posts about Invisible Illness Week 2012! #iiwk12

New post up later today: #iiwk12 - My 30 things meme

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Mimi's EDS Story

Sorry for the absence of posts recently... but more updates and posts are to follow soon!

Please watch the video below showing Mimi Newman telling her story about life with EDS and how she is trying to raise awareness about the condition.

Follow us on twitter: @hideandseekid



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Why the Zebra?

Why do we see zebras when reading about rare and invisible conditions like EDS?

Good question... 

In medical school, students are taught to diagnose patients based on the condition that’s most likely.  This makes sense.  Why attempt to diagnose something rare when the answer is right under your nose? This idea goes along with the saying: When you hear hoof beats, think horses, not zebras. The horses are the likely explanation, and the zebras are less likely. A medical zebra, then, is a person with a rare medical condition. As you may have guessed, Ehlers-Danlos syndrome is considered rare.

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#invisibledisabilities - Part 1

Here is some invisible disabilities that we learnt a bit about on our #invisibledisabilities day!

Myalgic Encephalomyelitis (ME) - ME is recognised as a neurological illness by the World Health Organisation. It is a real, often relapsing, debilitating illness, affecting up to 150,000 people in the UK, with similar rates of incidence in Europe, USA, New Zealand and Australia. More Info.

Hypermobility Syndrome (HMS) - Connective tissue proteins such as collagen give the body its intrinsic toughness. When they are differently formed, the results are mainly felt in the "moving parts" - the joints, muscles, tendons, ligaments - which are laxer and more fragile than is the case for most people. The result is joint laxity with hypermobility and with it comes vulnerability to the effects of injury. More Info.

Ehlers Danlos Syndrome (EDS) - Ehlers-Danlos syndrome (EDS) encompasses several types of inherited connective tissue disorders. Connective tissue provides support to parts of the body such as the skin and muscles, but in EDS the collagen that gives strength and elasticity to connective tissue is faulty. This results in hyperelastic skin that's fragile and bruises easily, excessive looseness of the joints, blood vessels that are easily damaged and, rarely, rupture of internal organs. There are six major types of EDS, categorised according to signs and symptoms, and the condition can range from mild to life-threatening. More Info.

Mitochondrial Disease - Mitochondrial myopathies are a group of neuromuscular diseases caused by damage to the mitochondria-small, energy-producing structures that serve as the cells' "power plants." Nerve cells in the brain and muscles require a great deal of energy, and thus appear to be particularly damaged when mitochondrial dysfunction occurs. More Info.

Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) - A condition of dysautonomia , to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia.More Info.

Brittle bone disease (osteogenesis imperfecta) - Osteogenesis imperfecta (OI) is the most common disease causing fractures in childhood. It also causes fractures in adults. OI is a genetic disorder usually resulting from abnormalities of the genes, which control the production of a protein called collagen. This is the main protein in bone and essential for its strength. The fragility of bone in OI is due to the collagen problems. It has nothing to do with the calcium part of bone, which is what shows up on X-rays. More Info.

These are just some of the Invisible disabilities we have learnt about - stay tuned for info on more, coming soon!

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10,000 hits!

On Friday 4th may, our #invisibledisabilities day we reached 10,000 hits on the blog!

Thanks so much for everyone who supported us and got involved, helping us to reach our target. We're now well on our way to the 11,000 mark and 20,000 is our next goal! Keep posted as there shall be many updates to come about invisible conditions. 

Keep spreading the word about invisible disabilities.

Next Post: Invisible conditions we learnt about on #invisibledisabilities day.

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