Disabilities Don't Define You - by Paisley Hansen

Disabilities Don’t Define You

Facing life with a disability can be a challenge. Uneducated or dismissive people may discount you as a member of society, or you may feel infantilized or marginalized by well-meaning family or friends. However, you do not have to allow your disability to define you. You are a person with a disability, not a disabled person. While you may never be able to change how some people view you, you can change how you view yourself. Here are some positive ideals you should embrace to keep your disability in a healthy perspective.

Focus on Strengths

Albert Einstein once said that a fish will go its entire life thinking it is stupid if you judge it on its ability to climb a tree. This is true of people, as well. You cannot go through life focusing on areas of weakness. Find your strengths and use them to your advantage. If you are living with a visual impairment, you may decide to pursue music. For those with speech issues, writing may be a good fit. Focus on what you can do, not what is difficult.

Overcome Obstacles

Confidence is built by overcoming challenges, so challenge yourself! If you have always wanted to perform on stage, finish a 5k, or travel to a foreign country, find a way to make it happen. You can break your goal down into smaller, easier-to-obtain goals to boost your confidence. Once you meet some of your goals, no matter how small, you will be able to overcome larger and larger obstacles as your confidence and belief in yourself soars.

- Photo taken from Flickr

Demand Independence

For some people with disabilities, receiving help from a caregiver or family member is essential. However, this does not mean you should allow yourself to be treated like a child. You can and should gently demand that your boundaries be respected if anyone attempts to provide help you don't want or need. This will help you feel independent and empowered, despite your disability. For example, if you are hearing impaired, there is no reason for well-meaning family and friends to take notes for you at a college lecture. You can rely on hearing aids, sign language, your professor's outline or speech-to-text software to handle your studies independently. If you are in a wheelchair and still want to drive, get a wheelchair van. There are many ways you can keep your independence.

Find Your Inspiration

Inspiration can come from many different sources, such as religion or celebrities. Many famous people have overcome disabilities to achieve their goals and make their dreams come true. For example, over a dozen previous presidents of the United States have had disabilities, including hearing impairments, learning disabilities, epilepsy and post-polio syndrome. None of these men let their challenges get in their way. If you are looking for a motivational quote to tape to your mirror, the following by deafblind author and activist Helen Keller is quite apt: "Although the world is full of suffering, it is full also of the overcoming of it."

Love Yourself

It is often said that you cannot love someone else until you love yourself. However, some people with disabilities may have trouble finding worth and value inside themselves. The media loves to portray anyone who is less than 'perfect' as the butt of jokes and unloveable. In reality, everyone is worthy of love. Make a list of your best qualities and read it every day. Cultivate your relationship with yourself and show yourself love by affirming your own worth and value every day.

Living with a disability cannot stop you from overcoming obstacles, being independent and achieving your goals. You are not your disability, and there is no reason to allow it to define you as a person. Changing your outlook on life with a disability is imperative to setting aside bitterness and forging forward with a renewed sense of purpose and accomplishment.

Written by Paisley Hansen

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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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Emily Yates: 'Journey of a Lifetime' - Part 1

- Emily and Seb at London 2012

- Emily and her friend Tom with 

The One Show's Alex Jones

Me and my twin sister, Lucy were born 10 weeks prematurely, and later diagnosed with Cerebral Palsy, after not being able to walk for quite a while when we were young.  My early memories are of constantly walking up and down the stairs at our local Children's Development Centre to try and strengthen my legs.  We had a lovely childhood, and loved school.  I don't remember our disability ever affecting us, how we made friends, or our outlook on life.

At 9 years old, I had an operation to improve my walking, as it was getting so bad that my knees started to knock together and my posture was worsening.  I had Derotational Osteotomy where my thigh bones were cut and pinned back together.  My hamstrings were also lengthened.  This huge procedure took quite a while to recover from, and I lost all the muscle tone in my legs, leading me to use a wheelchair.  I have no recollection of this change ever really bothering me; I was actually much more mobile with the wheelchair, and I started playing wheelchair basketball locally and at county level.  I remember my wheelchair even being quite cool when I started secondary school!  Again, apart from a few issues with school trips and risk assessments, my time at school was so enjoyable. I did well in my GCSEs, and decided to stay on at 6th form, with the hope of attending University.

In the summer of 2008, at the age of 16, I as given an amazing opportunity which would change my life forever. I was nominated by my school to go to southern Africa (Namibia, Lesotho and South Africa) with the JoLt Charity, an incredible organisation that takes disabled or disadvantaged young people on a literal 'Journey of a Lifetime'.  Here, I met people with similar life experiences and similar ambitions.  Together, we did things that we'd never imagined would have been possible.  We rode elephants, went cage diving with sharks, and climbed some of the highest sand dunes there are! I immediately got the travel bug, along with 30 life-long friends.

After JoLt, I was determined to travel some more. After my A Levels, I went to the Sinai Desert with the Yorkshire Schools Exploring Society, and was the first wheelchair user they'd ever taken on a trip.  I was also the first wheelchair user to ever cross the desert on camel! Whilst in the area, we also completed our PADI Open Water Scuba Diving course - a real challenge for me - but it was so worth it.

After Sinai, I moved to London after being accepted to study English at Queen Mary, University of London.  I totally fell in love with London, and all the opportunities it has to offer, and I adored student life!  It was half-way through this fresher year that I was accepted to move to Melbourne, Australia for a year studying abroad.  Going to the other side of the world was quite a scary thought, but I was ready for the challenge. In Australia, I snorkelled at the Great Barrier Reef, volunteered at a juvenile prison, and met another wheelchair user, Alex, who was to become my travelling partner for the year.  Of course, I managed to fit a little study time in, too...  Urging myself to grab such a once-in-a-lifetime opportunity like moving to Australia is something that I'm so proud of.  It would have been so much easier to sit back and stay in my comfort zone, but taking that risk was the best thing I've ever done.

I returned to London in July 2012, after heading from Australia to America to intern at the United Nations in New York.  It was at this time that I received a call from the London 2012 team, saying that my application to be a Games Maker at the Paralympic Games had been successful.  The day before my first shift, I got another call, asking me if I would talk at a press conference the following morning.  I said yes, thinking nothing else of it.  But, lo and behold, I arrived that morning to be greeted by Lord Sebastian Coe - we'd be doing the conference together in front of loads of journalists!  I told them all how amazing the Games had been for those with disabilities, 'lifting the cloud of limitation' on everything that they thought was previously possible.

I then worked at the Excel arena, working as a Games Maker in the warm-up team for Wheelchair Fencing.  I absolutely loved it.  We got the chance to take athletes out onto the field of play, and then take photos with them and their medals!

Seb then went on to use my 'cloud' quote in his closing ceremony speech of the Paralympics.  My phone was going mad with calls and texts - I couldn't believe it!  My friend Tom and I had previously spoken about how great it would be to write an accessible travel guide for the next set of Games at Rio 2016, and this was suddenly our opportunity.  I quickly got in touch with Seb and the team at the British Paralympic Association, both of whom have supported my ambition to create the guide right from the start.  I am now writing the guide in association with Dorling Kindersley and Rough Guides.  We are currently trying to raise sponsorship so that we can distribute the guide free of charge to those who will benefit the most from it. I'm also about to start a Master’s degree in Disability Studies at the University of Leeds, and I'm hoping that my dream to help others with disabilities to embrace the idea of travelling the world really makes a difference!

I am so fortunate to have been given so many wonderful opportunities, and each one has led to another one.  To anyone reading this, the only advice I can give is to urge you to say 'yes' to any exciting offer that is made to you; you never, ever know where it might lead!

 - Twitter: @EmilyRYates

Next week's blog post will feature a short Q+A with Emily about her experiences at London 2012 and her plans for the future - so stay tuned!

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INVISIBLE DISABILITIES: Branching Out!

We're aware that a lot of our content has been about invisible conditions that we're most familiar with, that's why we want to branch out and not only educate others but also educate ourselves about the invisible conditions that we know little about!

To do this, we shall feature weekly content about all kinds of conditions with a new post being uploaded every Sunday. Some weeks we shall focus on an individual condition including content ranging from videos to personals stories, facts to useful links whereas in others we shall feature collaborations and events that are happening across the world to help raise awareness!

We really want to branch out and reach as many people across the world as possible educating them about all kinds of invisible conditions and we'd love you to share your stories to help educate us.

Over the next year we shall feature posts about as many invisible disabilities as possible from the picture below. Starting with next weeks post on Fibromyalgia. If you would like to contribute your useful links, personal stories or anything you think others should know about the condition please email it to: hideandseekid@hotmail.co.uk

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UPDATE: Blog Relaunch!

Hello All... 

This is just a quick message to say sorry that we've been a bit quiet the last few weeks on all of our social platforms we're currently working on the re-branding and relaunch of our blog for you guys (as you can see by our new blog layout, what do you think?)

• We're working on some exciting projects and collaborating with some great people which we're excited to share with you all soon.

• We'll keep you updated about what we're up to on all of our platforms so make sure you're following us on Twitter and have liked our Facebook page. 

• If you have anything you'd like to include in our future weekly blog posts or just want to give us some feedback on our new look then we'd love to hear from you. Just email us at hideandseekid@hotmail.co.uk.

P.S. We're new to all this blog design stuff so we'd love to know what you think of it by emailing us at hideandseekid@hotmail.co.uk, and don't worry we do know that a few bits still need tweaking!

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Guest Post: Fibromyalgia Awareness Day!

Many EDS sufferers also have Fibromyalgia, this post is dedicated to helping to raise awareness about this condition as today is its National awareness day. A massive thank you to Bee Anne for collecting the information. If you'd like to find out more about Fibromyalgia or are interested to see how you can get involved please see the links at the end of the post.

A Simple Explanation of Fibromyalgia

Making Sense of a Complex Disorder,

For Those Who Don't Have It

By Adrienne Dellwo

Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.

If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.

Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.

The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.

Understanding the Pain of Fibromyalgia

Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.

That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into actual pain.

Other substances in the patient's brain amplify a host of other signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can further overload the brain. This can lead to confusion, fear, anxiety and panic attacks.

Understanding the Ups & Downs of Fibromyalgia

Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.

Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.

Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.

Understanding Stress & Fibromyalgia

Some people think fibromyalgia patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.

The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.

People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.

Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.

Understanding the Fatigue of Fibromyalgia

Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.

Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.

With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:

Insomnia (difficulty getting to sleep or staying asleep)

Inability to reach or stay in a deep sleep

Sleep apnea (breathing disturbances that can wake the person repeatedly)

Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)

Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)

Fibromyalgia In a Nutshell

A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.

Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

It's NOT psychological "burn out" or depression.

It's NOT laziness.

It's NOT whining or malingering.

It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.

The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.

For more information about Fibromyalgia and how you can help raise awareness please visit the National Fibromyalgia & Chronic Pain Association website.

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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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Find Me Good Care.

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!

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Rare Disease Day 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'.

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Rare Disease Day 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!

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It's 2013 - Welcome back!

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!

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Our (early) New Years resolution!

We are very sorry for the lack of posts and content recently but there will be a big update coming soon explaining our absence!

We will relaunch the blog in January and will post every Wednesday of each week!

In no way has his blog or this cause been forgotten!

Stay tuned for future updates.

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#iiwk12 - Day 2

Social Sites

Today's post will be about the various social platforms that you can check out to help raise awareness for Invisible Illness Week. As mentioned yesterday you can check out their twitter and Facebook page, but what can you say?

Well here you can draw up some inspiration from some of the many blogs featuring posts about the Invisible Illness Campaign:

Invisible Illness Week: Your Blogs for the Cause

Amy - www.lifeislikeamusementpark.blogspot.co.uk

Witty Gritty Invisible Girl - www.therevertedbutterfly.blogspot.co.uk

Seeking Equilibrium - www.rosemaryl.blogspot.co.uk

Merry - www.hopeismyanchor.com

www.allergictolifemybattle.wordpress.com

These are just a few of the great blogs where you can gain inspiration and knowledge about all kinds of invisible conditions, so make sure you check out the Invisible Illness website and see some others!

And ofcourse make sure you download a blogger badge!

So yesterday I told you to tweet..but what can you tweet about?

Well here are some of the 'Things to Retweet' suggested by the Invisible Illness Website. You can find more facts and statistics on the website!

"Facts to Tweet About Invisible Illness

RT @invisibleillwk #iiwk12 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw"

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#iiwk12 - Day 1

Sorry for the lack of posts recently.. but like many of you we have been engrossed with the success of the paralympics! Just before we get on to the main topic of today, we'd like to echo all of those comments and congratulate all of the Paralympian athletes that took part in the game, they were a true inspiration to all! 

Some of you may know that to show our support for Invisible Illness Awareness week (which is this week!) we are uploading a new blog post every day! So today's blog post is... 

An Introduction

Many of you may have come across Invisible Illness Awareness Week (#iiwk12) but for those that haven't here is a quick recap. It is a week dedicated to raising awareness about invisible conditions. This week there is loads of stuff going on online which you can get involved with to help raise awareness!

Including...

1) Tweet @invisibleillwk with the hashtag #iiwk12 and help get Invisible Illnesses the recognition they deserve! 

2) Tune in to the virtual conferences on the Invisible Illness Week website!

3) Blog about the week and link it to their website where you can read other entries!

4) Like their Facebook page - http://www.facebook.com/InvisibleIllnessWeek

5) Share this image:

There are many more ways in which you can get involved so make sure you check out their website and tune in here everyday this week from 10.00am BST to read our latest blog post about #iiwk12!

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News On Wheels

Before I explain more about 'News On Wheels'.. here is a quick social network update from HideAndSeek.

Make sure you follow us on twitter: @hideandseekID

Like our Facebook Page: HideAndSeek Disabilities

Drop us an Email: hideandseekid@hotmail.co.uk 

News On Wheels...

News On Wheels is an iniativie set up by Blake Leitch who is trying to encourage 'disability journalism'. This would involve disabled people writing content about current issues or offering advice to others in a similar position to themselves. You can find out more about Blake's initiative by checking out his website: News On Wheels and we'll feature more about our involvement with Blake's project soon! 

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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...

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http://withoutadiagnosis.wordpress.com/

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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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#iiwk12 - my 30 things meme

Update: From now on there shall be new posts up every Tuesday and Friday.

30 things you probably didn't know about me.. Copy and paste and tell others more about yourself. Taken from www.invisibleillnessweek.com

1. The illness I live with is: Ehlers Danlos Syndrome Type 3.
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: Giving up sport.
5. Most people assume: I'm as well as they are.
6. The hardest part about mornings are: Fatigue and joint pain.
7. My favorite medical TV show is: Casualty.
8. A gadget I couldn’t live without is: my iPad - easily transportable and comfortable to use.  9. The hardest part about nights are: discomfort.
10. Each day I take __ pills & vitamins. (No comments, please) it varies depending on my condition that day.
11. Regarding alternative treatments I: attended a tai chi class.
12. If I had to choose between an invisible illness or visible I would choose: Personally, invisible.
13. Regarding working and career: I won't let my condition stop me.
14. People would be surprised to know: I am in daily and constant pain/discomfort.
15. The hardest thing to accept about my new reality has been: how much the fitness of my body has deteriorated.
16. Something I never thought I could do with my illness that I did was: manage and control it.
17. The commercials about my illness: don't exist.
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up: football, tennis, hockey.
 20. A new hobby I have taken up since my diagnosis is: writing.
 21. If I could have one day of feeling normal again I would: there is no such thing as normal... But probably runny laying a football match.
22. My illness has taught me: not to naively judge others.  
23. Want to know a secret? One thing people say that gets under my skin is: when people say 'but you look fine'. 
24. But I love it when people: ask out of interest about my condition.
25. My favorite motto, scripture, quote that gets me through tough times is: "Life can only be understood backwards, but must be lived forwards. " - Soren Kierkegaard
26. When someone is diagnosed I’d like to tell them: They're not alone.
27. Something that has surprised me about living with an illness is: My understanding and tolerance of other illnesses.
28. The nicest thing someone did for me when I wasn’t feeling well was: just be there for me.
29. I’m involved with Invisible Illness Week because: it raises awareness about all kinds of invisible illnesses, helping people to get the support and advice they need.
30. The fact that you read this list makes me feel: really appreciative. Thanks, but yet more can be done to help raise awareness, so get in touch.

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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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