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Friday, 26 October 2012

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.

Tuesday, 11 September 2012

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:

Witty Gritty Invisible Girl - www.therevertedbutterfly.blogspot.co.uk
Seeking Equilibrium - www.rosemaryl.blogspot.co.uk

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"

Monday, 10 September 2012

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!


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!

Friday, 31 August 2012

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! 

Tuesday, 28 August 2012

Paralympic 4 - Channel 4 HQ, broadcasters of the Paralympics Games.

Although everyone is a bit blue about the Olympics finishing we still have the paralympics to look forward to, which starts tomorrow!

I've been sporting my 'over abled' t-shirt courtesy of Channel 4 and the Paralympic Games.

I'll definitely be supporting Team GB in the Paralympic Games and I'm certain that London will host a brilliant show. Soon there will be a new blog post up thanks to Becki who is taking part in the Opening Ceremony tomorrow, she'll share her emotions of being involved and her own personal story - good luck for tomorrow Becki! 

British Field & Track Olympic Medallists running a lap of honour at the Birmingham Grand Prix.

Friday, 24 August 2012

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



Tuesday, 10 July 2012

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.

Friday, 6 July 2012

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.

Wednesday, 4 July 2012

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

Monday, 2 July 2012

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

Wednesday, 16 May 2012

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.

Monday, 14 May 2012

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. 

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 DiseaseMitochondrial 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 occursMore 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-raysMore Info.

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

Sunday, 13 May 2012

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.

Thursday, 3 May 2012

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!


Sunday, 22 April 2012

Yesterday, Saturday 21st April, I was part of a group of about 20 people that initiated a worldwide trend.

If we can get as much twitter coverage as possible on Friday 4th may and tweet with #invisibledisabilities we can help raise awareness about all the invisible conditions!

PLAN: At 6pm GMT on Friday 4th May tweet with #invisibledisabilities to raise awareness! Lets see how many people we can educate about our invisible conditions.

You can use this generic tweet: Help raise awareness about #invisibledisabilities! RT 

Or even better think of your own - including your invisible condition!

E.G. Helping to raise awareness about EDS and other #invisibledisabilities!

So with 12 days to go, let's get as many people as possible on board with this:
  •  tweet about the day
  •  send emails to charities that support your condition - get them on board.
  • Tell your friends and family
  • Retweet
But most importantly tweet #invisibledisabilties at 6pm on 4th may and see if we can get it trending!

The more people involved the more we can make a difference and raise awareness about #invisibledisabilities! 

Tuesday, 10 April 2012

We can't find a specific day that is dedicated to Invisible Disabilities! So we created our own one.

4th May is our #invisibledisabilities day!

Aim: Raise awareness about invisible disabilities

Who: You and everyone else we can get on board!

  •  In the lead up to the 4th May and definitely on that day tweet with the #invisibledisabilities - and educate others about your condition! The more people that click on this hashtag - the more they can find out about all sorts of invisible disabilities!
  • Tell your charities - get them on board! They have the power to help spread our message.
  • Blog about it on your blogs and let your followers know!
  • Share the image pasted at the top of this post!
  • Tweet, facebook, share google+ - whatever social platform you use - you can get involved!
  • Even tweet celebs! (worth a shot..)
Nothing you do is too little or too small, it all helps to raise awareness about the 45+ invisible disabilities that we need to educate others about!

Friday, 6 April 2012

There are loads of Invisible Disabilities out there that we know little about so we want you to educate us about your condition!

We're starting with the letter A, if you have any of the below drop us an email describing your condition and how it affects people!

Anxiet Disorders
Asperger Syndrome

Thursday, 5 April 2012

"I've learned now how it's quite common for the parents of EDS sufferers to be accused of child abuse but, at the time, it came across as quite scary."

"A MOTHER was suspected by social services of abusing her children – until they were diagnosed with a rare disease which makes them susceptible to bruising and bleeding.
Abi Willshee said she was "very worried" after being visited by officials – and still finds herself telling strangers about her children's condition to stop them jumping to conclusions.

Both she and two of her children have been diagnosed with Ehlers-Danlos Syndrome (EDS) – a genetic disorder estimated to affect one in 5,000 people.
But, in the months before the diagnosis was made, Abi, 26, did not know why she and her sons were bruising easily, suffering from nosebleeds and dislocating their joints.
She was pregnant with her fourth child when the diagnosis was made and said she was relieved to get answers but devastated to learn two of her children had inherited her condition.
Abi, of Swadlincote, said she had planned to get sterilised to stop her passing the condition on again – but then discovered she was expecting a fifth child, who will be born in July.
She said: "I've learned now how it's quite common for the parents of EDS sufferers to be accused of child abuse but, at the time, it came across as quite scary.
"I completely understand why they were concerned and it still worries me now when people see the children with bruises. I'm terrible at telling people about their condition because I am paranoid.
"Once we were diagnosed, we never heard from social services again about it, so I guess we're quite lucky. But I was so distraught about giving the children the condition – and it took me a while to get my head around it."
Single Abi said her sons, Jamie Smith, eight, and Ryan Smith, seven, had been diagnosed, while daughter Carly Titterton, four, and youngest son, nine-month-old Leroy Titterton were still too young for tests.
She said: "Carly doesn't tend to bruise but she is quite flexible, which can be a symptom, so she will be re-assessed at five, but Leroy is exactly how Jamie was at this age. Shortly after he was born, he sucked at his own arm and left this huge bruise, which took about two weeks to disappear. He's also quite floppy and joints tend to click and grind.
"It worries me but it's a waiting game at the moment. I don't know whether to wrap him up and protect him. But I don't want him to stop being a normal kid either."
EDS is caused by a defect in the collagen, or connective tissue, which is the main building block in the body. Collagen provides strength for the different parts of the body. Easy bruising accompanies most forms of EDS, as does increased joint mobility and loose joints that are prone to dislocation. Pain is also common in sufferers.
Some types of EDS can be life-limiting but Abi and her children's condition is not thought to be, although it will remain with them for the rest of their lives. Pregnancy can also be life-threatening for EDS suffers.
Abi, of Brookdale Road, said: "I was born with it but I didn't show many signs of it as a child. But, after having my first child, I started to suffer from backache, which the doctors just associated with having been pregnant. Whenever I dislocated any of my joints, I would just put it down to being clumsy.
"But, a few months before we were diagnosed, the children went to see a paediatrician who picked up on the bruising. The next thing I know, social services were investigating.
"They made a couple of visits and spoke to the children but the paediatrician also referred us to a geneticist. Because I was pregnant, we were rushed through quite quickly and got the diagnosis.
"I was also worried at the time because I thought the boys were possibly being bullied. The diagnosis pieced everything together and made life make sense but I was obviously gutted."
Abi, who is 22 weeks' pregnant, said she had always been concerned about Jamie from birth, while she started to worry about Ryan when he was 18 months old.
She said: "Jamie would always be wobbly on his feet and, if he fell over, he would get an instant bruise, while Ryan was better on his feet but his skin was fragile and he'd get nosebleeds. When he was 18 months old, he slipped in the bath and bumped his face but, although it was nothing much, the skin near his eye split open.
"I never wanted my children to be ill and I'm always worried about them. Sometimes, when my eldest comes home, he will sit down and cry because his ankles hurt him and there's not a lot I can do."
Abi, whose weeks are filled with hospital appointments for her and the children, said she was hoping to give birth to her fifth child by caesarian and get sterilised at the same time.
She said: "Labour is usually quick but, last time, I was taken to a hospital where no-one knew about my condition. I lost a lot of blood and the doctors and nurses were quite panicked. It wasn't very pleasant. Not a lot is known about EDS, which means it's hard for people to get diagnosed or get the right care."
She added: "When I was pregnant with the others, I was quite excited and went out to buy them things but I can't quite imagine this baby. I know it's a boy but, because I now know more about what's involved, I'm worried.
"But the children are happy. I have to think about what we can do together to keep them safe, with contact sports and things like that out of the question, but I guess they don't know anything different."
For more information about EDS, visit www.ehlers-danlos.org" - taken from This is Derbyshire

Sunday, 1 April 2012

I've been invited to meeting in London on Tuesday 3rd April about filming a campaign video about how chronic pain and EDS affects people to raise awareness. Once filmed the video shall be featured on the UCH website for all to access including teachers, parents and pupils.

In the meeting we shall discuss how life with chronic pain and EDS affects us.

So if you suffer with either of these conditions, are there any thoughts and suggestions that you'd like to be included?

Let me know either by commenting or emailing at hideandseekid@hotmail.co.uk 

Thursday, 29 March 2012

"Emma Sanderson returned from holiday with a bug which became an unusual illness which she wants to help others to conquer via a charity dinner
Emma Sanderson’s growing up in Longridge was as normal as anyone’s – school at the CE primary and then Longridge High where she gained great results before studying A-levels at Clitheroe Royal Grammar.
Now, aged 21, she works at the primary school at lunch times and is a volunteer helper every Thursday at St Paul’s Walkie Talkies children’s group.
However, in the summer of 2007 her life changed dramatically after a holiday in Majorca.
“It would never remain the same after I returned with a stomach bug and was unable to keep any food down at all,” she recalls.
“In the October, I was admitted to Blackburn Hospital and virtually remained there until the December. Countless tests and exploratory operations where carried out – I even travelled to Sheffield for a cap-endoscopy, for which you swallow a capsule with a remote controlled camera inside it and it takes pictures of your insides as it travels through your body!
“But no diagnosis could be made as to what was causing these stomach problems – some even saying ‘maybe it was in her mind.’ It was an extremely hard time for everyone involved.”
At the end of 2010 a consultant at Blackburn advised Emma’s family to pay to see a professor in neurogastroenterology in London. Within an hour of meeting him, the professor had diagnosed Emma with EDS type 3, a hereditary condition where the collagen in the body is “too stretchy”. In Emma’s case the condition had also moved into her gastro-intestinal tract and internal organs." - Click here to read more

Inspired by Emma's Story? Want to help out some more?
Emma is organising a dinner and disco for fundraising!
Where: Ferrari's Country House Hotel, Longbridge
When: 13th July 2012
Price: tickets are £25
If interested let Emma know via email: emma.sanderson@me.com
Emma "It will be a great fundraising event and help to get MY INVISIBLE, VISIBLE!"

Wednesday, 21 March 2012

Do your loved ones have a hard time understanding your chronic illness or pain, because to them you LOOK fine? But You LOOK Good! is a 56 page book that gives those living with chronic illness and pain a voice about how they feel, what  they need and how others can be an encouragement to them. It is a convenient, informative way to educate loved ones about what people living with ongoing illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest! - Click here to read more and order the book
Wayne Connell - Founder and President of Invisible Disability Association (IDA)
"Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.
Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.
As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.
In order to address and teach this new language of invisible disabilities, I wrote a booklet called, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” It includes many ideas gleaned from my wife’s journal. It will help you to learn how to converse in your relationships with people touched by illness, pain and disability.
Invisible Disabilities Association Ambassador Mike Pierce (AKA Antarctic Mike) has learned this language of invisible disabilities. Here is his story." - Click here to read the rest of Wayne's story