Login

Register

Login

Register

Invisible illnesses: Essex teen’s body is so fragile it could break ‘like glass’ | #socialmedia | #children | #parenting | #parenting | #kids


Every activity 19-year-old Emily Heddle does could lead to a sprain, dislocation or scar.

Simply climbing out of bed could lead to a sprained ankle, or stepping down onto the pavement could cause a dislocation.

Even just a simple paper cut or the slightest scratch will leave a permanent scar on Emily’s skin.

Since she was a child, Emily has had to treat her body as if it is was made from glass.

That is because she has a condition called hypermobile Ehlers Danlos Syndrome (EDS), a rare genetic disorder which affects the connective tissue in her body.

Because the connective tissue is faulty, Emily has hypermobility and fragile skin, meaning she has chronic pain and fatigue, as well as constant sprains, bruising and scarring from even the slightest of activities.

Childhood firsts such as holding a pencil to write or learning to ride a bike were not on the cards for Emily because of her condition.

In the future, Emily may not be able to walk or feed herself anymore where the condition is degenerative.

But since she was tiny, Emily and her parents have done everything they can to adapt and find alternatives for her to have the same opportunities to work, learn and explore.

Crucially, however, unless you saw a bruise or a bandage, or perhaps a pair of crutches – Emily’s condition is completely invisible.

Which is why she is so keen to speak out about her experience and spread awareness for others to understand, but also anyone else out there who may be going through the same thing she is.

This is what life is like for the teenager living with a body ‘like glass’.

‘I couldn’t pick up a pen’

Emily, from Wickford, was nine-years-old when she was diagnosed with EDS – exactly the same day as her mum, Marie, 37, was too.

“She knew she had always struggled with things but in her generation, she didn’t know what it was,” Emily said.

“There wasn’t social media to talk about it. She thought everyone was in pain all the time that everyone couldn’t walk down the stairs too fast or their ankles would snap.”

The first signs of Emily’s condition started to appear when she was just four.

“The first thing we actually noticed was when I was in school in reception, the teacher said all the kids could hold a pen but I couldn’t pick up the pen.

Even the slightest paper cut or scratch will scar on Emily’s skin

“They thought it could be a developmental delay and they said to my mum to practice at home but I couldn’t figure out how to hold it in my hand.

“That’s because there is a delayed connection so it takes my brain a really long time to figure out, I really struggle with simple tasks.

“That was the first thing and I was just being tired all the time and in pain most days, struggling in PE.

“Kids would be running around and I would have to sit out after two minutes.”

An invisible illness is simply a condition or illness which we cannot physically see.

Every day, whether it is at work, school or just walking down the street, some of the individuals you pass will be living with life-changing, chronic or debilitating conditions which affect every aspect of their daily life.

In the UK, one in five people have a disability. Of those, 80 per cent have a ‘hidden disability’.

We have spoken to several individuals living with a variety of the conditions in the hope that it will shine a light on their experience, spread awareness and stimulate conversation.

From a teenager whose body is ‘like glass’, to a woman with an ‘invisible’ brain tumour – to conditions like chronic fatigue, bowel issues and incontinence – a number of individuals have stepped forward to share their stories.

Once Emily was diagnosed, she started to visit the doctors frequently, visiting specialists and a physio for occupational therapy.

She said: “I took so much time off school, I wasn’t well and suddenly my parents weren’t letting me go out and do the same things. They would say ‘You are not well’.

“There’s definitely a different way of learning things, you adapt to how you do things.

“We would have a pool float cut up and then put them on a pen or a knife and fork so it there was an easy handle to hold or we would use Velcro on school shirts so I could still do it up.

“It was little things like that so I could still be independent. I am massively grateful for my parents’ support, it has been incredible.”

Learning to adapt

https://parentsecurityonline.com/
Emily has had over 100 sprains and dislocations

At primary school, the younger children didn’t generally ask too many questions when Emily was ill or sat out of PE, but secondary school was harder.

“Secondary school was much more difficult,” Emily said.

“I think when you meet people now, you have to explain what’s happening and even though you can never tell by looking at me that there’s something wrong, then you have to work with a laptop every day because you can’t write and it becomes more visible.

“Some people were not very nice and would call me not nice things. I have been called a vegetable and all sorts of things.

“Every PE lesson I couldn’t do it and people started to talk behind your back.”

While Emily’s parents worked hard to make sure she could adapt to activities and have the same opportunities, there are naturally some things which Emily has missed out on.

“I have always found a way to adapt and do things my own way, but some things I definitely wish I been a part of,” she said.

“I can’t swim, I can’t ride a bike, I can’t do any exercise like going to the gym or a run.

“Everyone wants to be a dancer or do gymnastics too and I would have friends going off to big parties or play areas and I wasn’t allowed because it was too dangerous.

“It’s quite isolating. In a way you always have people saying ‘you can be whatever you want’ and ‘you can do whatever’ and technically I can’t.

“I’m 19 right now and told all the time I can’t do things.”

According to the Hypermobile Syndromes Association, Ehlers-Danlos syndrome is a group of conditions that arise from genetic alterations in collagen, which are the proteins in the body.

Collagens give strength and support to the skin, bone, blood vessels, gut, tissues, and joints like ligaments, tendons and cartilage.

Because collagen is genetically determined, it means any alterations in the genes result in weaker or more fragile and stretchy tissues throughout the body.

There are several types of EDS that may share some symptoms, including joint hypermobility, stretchy skin or fragile skin that breaks or bruises easily.

‘You have to treat yourself as if you are made of glass’

Over the years, Emily has probably had 100 dislocations and sprains, and uncountable scars and bruises.

“I have got out of bed in the morning before and my ankles have sprained,” she said.

“Not being able to walk home from school even though it’s a five-minute journey.

“I have stepped down onto the pavement and dislocated my ankle just by the small drop.

“You have to treat yourself as if you are made of glass.

“Getting out of bed isn’t too crazy, it’s so easy to tear things and the slightest cut you get is going to scar.

“I am always looking like a bruised banana because the slightest little bump will bruise.”

The chronic pain is always in the background too – some days worse than others.

“It feels like a big weight that’s pressing on you all the time,” Emily said.

“There’s always pain in the background. You could be having a time of your life but you are still in pain underneath.

“One day it’s my back, one day it’s my knees, the next day my shoulders.

“It feels like a really bad muscle ache or a twisted ankle – like a dull throbbing.”

‘I don’t know if I’m going to be able to walk’

At home, Emily’s cupboards are stuffed full of bandages, supports and crutches for whenever she needs them.

There are 13 types of EDS, but sadly none of them has a cure. All you can do is help to manage the symptoms.

Some of the more severe forms can shorten a person’s life expectancy, although Emily’s type is not thought to.

“It’s the fear of injury which is the worst part,” she said.

“I could be in a wheelchair one day permanently. The majority of people end up in a wheelchair or are tube-fed so it’s the unknown of what the future is.

“I don’t know if I am going to be able to walk or to eat by myself.

“As you get older, it gets worse so as you get older kind of prepared for that but I don’t like thinking about it and I don’t want to accept that.

“When you are out with friends all the time, the thought of not being able to do that is scary.”

Currently, Emily works at Greggs but is also doing an open university course from home studying philosophy.

Emily said: “Getting a job was extra difficult because I can’t lift heavy things, there are lots of days I can’t come in.

“Once an employer reads that, it’s a very big list of all the things I can’t do.

“I wanted to go to uni but I can’t live by myself, I need someone there with me with a car who can take me to and from hospital.”

For Emily now, she is keen to spread awareness of EDS to help people know and understand the condition but also to push for more research towards finding a cure.

“Just by looking at someone, you wouldn’t know that there is something,” she said.

“A lot of my friends don’t actually know that I have EDS, I don’t want everyone to worry about me. Because I don’t mention it, you can hide it.

“I think people should be more aware that you don’t know what someone’s going through.

“There is no cure for most invisible illnesses and they are hard to treat because they are invisible.

“So many go undiagnosed because of that.”

In the future, Emily wants to climb Ben Nevis with her boyfriend to raise money and awareness for EDS.

You can find out more and help donate to Hypermobility Syndromes Association here.





Source link

Leave a Reply

Shqip Shqip አማርኛ አማርኛ العربية العربية English English Français Français Deutsch Deutsch Português Português Русский Русский Español Español

National Cyber Security Consulting App

 https://apps.apple.com/us/app/id1521390354

https://play.google.com/store/apps/details?id=nationalcybersecuritycom.wpapp


NATIONAL CYBER SECURITY RADIO
[spreaker type=player resource="show_id=4560538" width="100%" height="550px" theme="light" playlist="show" playlist-continuous="true" autoplay="false" live-autoplay="false" chapters-image="true" episode-image-position="left" hide-logo="false" hide-likes="false" hide-comments="false" hide-sharing="false" hide-download="true"]
HACKER FOR HIRE MURDERS
 [spreaker type=player resource="show_id=4569966" width="100%" height="350px" theme="light" playlist="show" playlist-continuous="true" autoplay="false" live-autoplay="false" chapters-image="true" episode-image-position="left" hide-logo="false" hide-likes="false" hide-comments="false" hide-sharing="false" hide-download="true"]

ALEXA “OPEN NATIONAL CYBER SECURITY RADIO”

National Cyber Security Radio (Podcast) is now available for Alexa.  If you don't have an Alexa device, you can download the Alexa App for free for Google and Apple devices.   

nationalcybersecurity.com

FREE
VIEW