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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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: Q+A - Part 2

After reading about Emily's incredible story so far we decided to ask her some questions about her involvement at London 2012 and what her plans are for the future. Here is our short Q+A session with her...

1. As a wheelchair user, how did you find the facilities and accessibility at The Games?

I thought it was incredible.  Not only were the facilities great, they were so great that I honestly did not have to put in any extra effort compared to an able-bodied person.  The lifts and toilets were conveniently placed; everything was lovely and flat, with vehicles to help you out if you struggled with distance.  Most of all, though, there was always someone willing to help you out if you needed it.  Such an inclusive, wonderful atmosphere.

2. Would you encourage a disabled person to apply to be a volunteer at The Games and why?

Absolutely, and why not?  Everything you could possibly need will be available to you.  You will make friends that you immediately have a bond with, as you are all volunteering for the same reasons: to have fun, and to make a difference to the success of the event and the enjoyment of the athletes.  I'd even say that I had an advantage working as a disabled volunteer at the Paralympics. I felt that, a lot of the time, I was able to communicate well with athletes who had similar disabilities, and they were equally confident that I would be able to help them out.  My wheelchair also fell apart during one of my shifts, and I couldn't have been in a better location for it to be mended by all the amazing technicians!

3. What is your favourite memory from working at London 2012?

There's so many! Of course, meeting Seb was incredible, as was being mentioned in his speech.  What I remember most, though, is the constant buzz that surrounded London.  Everyone was vibrant and happy; it made working at the Games an absolute joy.

4. What advice would you give to a disabled person that is considering applying for tickets to Rio?

Read the accessible guide I'm writing, which will hopefully tell you all you need to know about making the most of your time there!

5. Tell us a bit about your book 'An Accessible Guide to Rio' and when can we get our hands on a copy?

Right now, the guide is still in the very early stages. The aim, though, is to create a fully comprehensive guide that will help those with varying disabilities to get the most out of their time in Rio. It'll let you know where is good to visit, where you can rest your head after a busy day, and where you can go to party with ease!  Of course, there will be lots of information about accessible transport and tourist attractions, too.  And it won't just be suitable for those with disabilities either.  The elderly and families with children in pushchairs may also benefit from it, too.  If all goes to plan, we are hoping that the guide will be distributed free of charge through disability organisations and networks, so that the guide really does hit its target audience!

Emily's Twitter: @EmilyRYates

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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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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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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...

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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#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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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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May is Ehlers Danlos Awareness Month!

May is Ehlers Danlos Syndrome awareness Month! This is an invisible condition that I suffer with and little is known about it around the world not only amongst the public but also professionals. Below is more information about EDS taken from the EDNF website.

What is EDS?

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

What are the symptoms of EDS?

Clinical manifestations of EDS are most often joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.

Skin: soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

What are the types of EDS?

There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that “runs true” in a family. An individual with Vascular Type EDS will not have a child with Classical Type EDS.

How is EDS diagnosed?

The categorization of the Ehlers-Danlos syndromes began in the late 1960s and was formalized in the Berlin nosology. Over time, it became apparent that the diagnostic criteria established and published in 1988 did not discriminate adequately between the different types of the Ehlers-Danlos syndrome or between the Ehlers-Danlos syndrome and other phenotypically related conditions. In 1997, a revised nosology was written in Villefranche that redefined the types of EDS. 

How prevalent is EDS?

At this time, research statistics of EDS show the prevalence as 1 in 2,500 to 1 in 5,000. It is known to affect both males and females of all racial and ethnic backgrounds.

How is EDS inherited?

The two known inheritance patterns for EDS include autosomal dominant and autosomal recessive. Specifics regarding genetic inheritance may be found by following the link below. Regardless of the inheritance pattern, we have no choice in which genes we pass on to our children. 

What is the prognosis of someone with EDS?

The prognosis of EDS depends on the specific type. Life expectancy can be shortened with the Vascular Type of EDS due to the possibility of organ and vessel rupture. Life expectancy is usually not affected in the other types.

What can I do now?

The defining trait of those affected by EDS is the search for information. The rise in Internet usage has delivered a significant benefit to families affected by EDS. EDNF members are sharing information on-line and learning from each other in ways that were impossible not very long ago. 

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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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TOMORROW! #invisibledisabilities

Tomorrow is our #invisibledisabilities day, so if you're on twitter use the hashtag #invisibledisabilities all day if possible but mainly at 6pm (BST) to help raise awareness about all kinds of invisible conditions!

If you're on facebook, google+, pinterest, or whatever social network you're on, talk about the #invisibledisabilities initiative and educate others about your condition!

All the support so far is greatly appreciated!

Tomorrow, let us tell the world about our #invisibledisabilities and make the invisible visible!

Remember: 6pm - twitter - #invisibledisabilities - tweet about your condition and where about in the world you are!

Thanks!

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