How can you get involved? #RareDiseaseDay

Want to know how you can help raise awareness about rare disease? Well February 29th 2012 is rare disease day and there is plenty you can do!

1. If you're on twitter use the #RareDiseaseDay to get it trending worldwide.

2. Send me videos and posts to put on this blog about your experience with a rare disease!

3. Some more easy ideas

• Display posters, images or other awareness raising media such as ballons
• Distribute stickers and flyers
• Organise rare diseases events around topics paramount to patients
• Organise a competitive event focused on rare diseases
• Coordinate letter writing or email campaigns to local policy or national policy decision makers
• Arrange to meet with local and national authorities

Still want to do more? Great! Click here for more ideas!


Don't forget to document your activities by taking photographs and videos and sending us them to feature on the blog!

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8 days to go!

8 days to go until rare disease day 2012!

Jamie O'Brien's Story

Jamie O'Brien's ambition is to work in music production and website design. He lives in the North East of Ireland. He's 21 years old and last year he started a course in Creative Media at Dundalk Institute of Technology. A few months into the course, he realised that his condition would make it impossible for him to continue for now and so he has had to take a break. Jamie has Ehler-Danlos Syndrome Type 3 (the hypermobility type).

Every day, several times a day, Jamie's joints dislocate. The slightest movement or exertion triggers dislocation - lifting something very small puts out his wrists, climbing a stairs will dislocate his knees or ankles. His symptoms first appeared when he was about eight years old, starting to get physical and play sports. He could not write more than one sentence and his teachers at school thought he was just being lazy. Back then, the biggest challenge was getting people to believe that there was something wrong. "I didn't even believe it myself", he says. He did not understand then that his fingers were actually dislocating.

Some things got easier after he was diagnosed at 16. He found it easier to make friends once he could explain his condition. Disability services became available to help with certain aspects of life. Now his greatest challenge is his left shoulder. He has learned to deal with most of his joints, and to cope with constant pain. His attitude is "snap it in, keep smiling, keep walking, you have to get used to it." But when his left shoulder goes, he has no choice but to attend the Emergency Department of a hospital. And if the doctors are not familiar with him or his condition, it takes time to get the right treatment. More time than he can afford to be away from a busy college schedule.

He hopes to be able to study again though, and plans to return to college as soon as he can get the pain and dislocations under enough control to allow him 2-3 weeks between hospital visits. He would like more people, including doctors, to understand the issues around rare disease. "There's no system for people with a rare disease," he says. But he hopes that initiatives like Rare Disease Day will go some way towards building awareness and improving the situation of all those affected. In the meantime, he says "you have to take life one laugh at a time. - Rare Disease Day 

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Interview with Kate Cross and Byron the dog! (Woof)

If you live in the UK you will most likely have heard of Kate Cross in the news recently who suffers with Ehlers Danlos Syndrome and has Byron the dog to help her with day to day tasks. If you haven't please click to read about Kate in the Mail Online and watch the video of Kate on The One Show.

What Byron and Kate are doing is amazing not only does it help raise awareness about Ehlers Danlos Syndrome but demonstrates the support available out there!

Next month I am interviewing Kate online and shall post it here on the blog! So if you have any questions you would like me to ask her about life with Byron either comment here or email me your questions hideandseekid@hotmail.co.uk

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Amanda's Poem

Amanda, who suffers with EDS found a way to express her views and feelings about coping with her condition.

Win or lose?

Day after day, you live your life in pain,

Wondering if your old life will ever return again,

Everything was so good, your life and dreams planned out,

Then suddenly it’s all gone, you want to scream and shout,

To survive each day, feels like running a never ending race,

But with each stumble and fall you feel a disgrace,

Pain, sickness, fatigue, your symptoms always on show,

Hospitals, tests and treatment, why can’t they all go,

Every day is a battle; you always seem to lose,

But it’s still your life; you still get to choose,

When everything gets too much, you feel like all is lost,

To maintain your old life comes at a daily cost,

A part of you is strong and brave inside,

Riding out the storm and waiting for the passing tide,

Take a close look, and find love is still around,

When you can take no more, support keeps you on solid ground,

Whether interests, friends, family or faith,

Something is always there to protect and keep you safe,

Life may have changed, hopes and dreams, illness stole them all,

You can still win, knowing there is someone there to catch you if you fall,

When you are done, all seems dark, you can take no more,

You will have gained new things, things better than before,

A daily fight inside and out, but don’t ever lose hope,

In times of suffering laughter, care and joy will help you cope,

You may still lose the battles, not all are possible to win,

But the war is not over, just never give in,

Life is hard, with constant illness and pain,

It is not fair, but keep fighting your efforts are never in vain,

It may be tough but every win comes from a fall,

But persevere and one day, your dreams, you’ll conquer them all,

Step-by-step, inch-by-inch, progress is distant and slow,

When you reach the finish line, the rewards will show,

Examine your life, the happiness and joy still around,

When you look back one day, you’ll be surprised what you found,

The war can be won but it may take a while,

But if you keep fighting the battles you can look back and smile,

At the friends, at the memories, the pain and suffering too,

In the end it made you strong, all that you went through,

Remember the bad times when it felt like the end,

When you got back on track, with help on which you could depend,

The battles will remain, that’s life in your shoes,

But the outcome is yours; it’s your life to choose,

So will you win or lose?

Thank you for sharing Amanda!

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Newspaper article: We need more Byrons!

Your wish is my 100 commands: Talented dog makes the bed, fetches the milk and even gets money out of cash machine for disabled owner

• Owner hadn't been outside on her own for 18 months before she got Byron
• Seven-year-old dog fetches everything from milk in the fridge to hot water bottle and knows more than 100 commands

As dog owners know, you are lucky if your pooch can be persuaded to collect your slippers without chewing them to pieces.

But golden labrador Byron performs dozens of such tasks faultlessly for his owner every day.

He helps 'best friend' Kate Cross peg out her washing, make her bed, go shopping and even take money out of the cash machine.

Scroll down to meet Byron 

I'll push that for you: Byron has learnt how to press the button at road crossings

The trained hound is a life-line for Kate, who suffers from Ehlers Danlos syndrome. The rare condition means the retired teacher's joints are so weak that she can dislocate her shoulder from just opening a door.

But Byron is never far from her side - and has learned to do all the things Kate struggles to...

Click here to read the full article...

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EDS - "Not being respected when seeking medical care"

"People who suffer with Ehlers-Danlos syndrome, an inherited connective tissue disease, have reported not being respected when seeking medical care. The lack of respect can have an emotional impact on these individuals that can last for many years and affect their ability to seek health care.

Ehlers-Danlos syndrome is a condition in which there is a defect in the tissues that provide support to the body’s muscles, skin, and ligaments. This results in unstable joints, which are the result of faulty collagen, a protein that provides strength and elasticity to connective tissue.

As a result, people who have Ehlers-Danlos syndrome, which affects approximately one in every 5,000 people, according to the Ehlers-Danlos National Foundation, experience a range of unusual and painful signs and symptoms. These can include loose/unstable joints which are prone to frequent dislocations, joint pain, fragile skin that bruises or tears easily, severe scarring, slow and poor wound healing, development of fleshy lesions (molluscoid pseudo tumors), chronic debilitating musculoskeletal pain, poor muscle tone, and gum disease.

There a six major types of Ehlers-Danlos syndrome, which are classified according to the signs and symptoms. They include hypermobility, classical, kyphoscoliosis, arthrochalasia, dermatosparaxis, and vascular. The vascular type is considered to be the most serious, because there is the possibility of organ and blood vessel rupture. The syndrome affects both males and females of all ethnic and racial backgrounds.

The current study, which was published in the January 2010 issue of Disability and Rehabilitation, consisted of a questionnaire directed at individuals who suffer from Ehlers-Danlos syndrome. The men and women described their encounters with people in health care as “being ignored and belittled by health-care professionals,” to “being assigned psychological and/or psychiatric explanations,” and “being treated and considered merely as an object.”

As a result of these experiences, the individuals noted that they were “mistrusting the physician” and “risking bad health.” The researchers note that health-care professionals should protect human dignity and treat each patient as a unique human being who has the ability to master his or her own life. To learn more about Ehlers-Danlos syndrome, you can visit the Ehlers-Danlos National Foundation website." - Emax Health

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Rare Disease Day 2012!

Rare Disease Day 2012 - 29th February!

This year Rare Disease Day is on the 29th February, there will be events all around the world to advertise and raise awareness about rare diseases on this day. There will be a lot of media coverage across the globe and you can get involved!

Rare Diseases Day 2012 in the UK

The Royal Holloway University of London will be hosting an event whereby there will be presentations and representatives of many charities that support a variety of rare diseases. Some of the exhibitors include:

• The Jennifer Trust for Spinal Muscular Atrophy
• Rare Disease UK
• The BioScience Student Society, Royal Holloway
• The Educational Support Office, Royal Holloway
• Action Duchenne
• AKU Society
• DebRA
• Sparks
• Tuberous Sclerosis Association
• Genetic Alliance UK
• Ciliopathy Alliance
• PKD Charity
• Ehlers-Danlos Support UK
• Myasthenia Gravis Association
• Muscular Dystrophy Campaign
• BHD Foundation
• Ichthyosis Support Group
  For more information about this event and how to attend  please click on the following link: UK Rare Disease Day 2012

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