Some people find it hard to show their tubes, some feel embarrassed, ashamed or fear the reaction of others. Some people don't want to have to explain their story every time someone sees a foreign object protruding from their skin. Me? I do not think my tubes are pretty, but I will never be ashamed that they are a part of me. I will never be ashamed of medical intervention that keeps me alive. They are growing in numbers, my little tube army. The front line in the battle against my body. With them? I win, I have a 100% survival rate as I am typing this right now. After all my body has been through and is going through I think it deserves some help from medical intervention. To me my tubes represent strength, without them my body becomes weak, My 100% survival rate starts to become threatened. So I will wear my tubes with pride, with gratitude and with hope- that they will continue to help me battle on the front line and succeed in giving my body what it needs to be strong, and fight the rest of the battle that tubes cannot reach. I will happily tell my story every time someone asks, because it means that some has taken the time to learn, instead of stare or turn away. I will share my story because you never know who it might reach and help, perhaps fitting a piece into a puzzle of their own. My tubes tell a story of an ongoing battle. They are an external reminder of the internal turmoil that my body faces everyday. They can be hidden, and that's when invisible illness is most apparent, I don't believe what you can't see can't hurt you, because it's what I cannot see that hurts my body most, these little guys? They're on my side.
Doing 'my bit' to raise awareness about Ehlers-Danlos Syndrome is really important to me. With awareness comes understanding and that is something that we really need more of in both a public and medical setting. Ehlers-Danlos Syndrome is not just bendy joints. It afftects multiple organ systems and results in life long management of multiple symptoms, whether that be gastrointestinal, urological, neurological, orthopaedic, cardiology, endocrinology, dermatology...The list is endless and it is all areas that our faulty collagen affects. There are forms of EDS that can be life threatening and many that are life limiting. Having EDS is not only a battle physically, but practically also. With a condition that is so unknown, fighting for care is extremely difficult and finding specialists that don's have months and months of waiting lists is practically impossible. This means we are often left to see doctors with an inadequate level of understanding and as a result receive poor treatment. By raising awareness and speaking out EDS will become known and interest in it's causes will become a focus for medics as a result. Please help me reach out and make the voice of EDS patients world wide heard!
Today I posted this on my Facebook page 'Building a dream- Chloe's Way Forward'. It is a small piece on how different my life is now to a few years ago, yet still very much a purposeful existence and one I will use to the maximum of its capabilities. Here it is:
I am so proud of both the Chloe's in these pictures.
The first Chloe took pride in her appearance after a long struggle with depression and the motivation to move from her bed. She was focused and blessed with wonderful opportunities and dreamt of travelling, working hard and really making a difference in the world. That Chloe didn't hold back her feelings, she spoke her mind and made sure she advocated for herself so her views were heard. She volunteered, helped others and was finding her feet in incredible ways.
The second Chloe is me today, a Chloe that has realised her life has taken a different path to the one she desired, but isn't bitter or angry at the battles she faces. This Chloe manages to find positives in difficult circumstances. She shows relentless strength when enduring medical procedures and difficult symptoms. This Chloe dedicates a majority of her time to supporting others. Even with all she faces herself, she finds the time and strength to try and make a positive difference for others. This Chloe is still strong, just in different ways. This Chloe is fighter, a warrior, she doesn't give up but instead drags herself over the hurdles with all her might.
It is okay to compliment yourself, speak positively of your amazing qualities and see from an outsiders perspective how special you are. It should not be classed as vein or self centred. It should be classed as loving yourself in wonderful ways.
Throughout May I will continue to try and raise awareness for EDS with my pledge to talk to someone about EDS every single day. Just by talking to someone about EDS plants the seed in their brain, that memory can then be triggered in everyday life and EDS will pop into people minds. Stand up for EDS and make a difference- Take your pledge today!
I created this video to give an insight into what it is like to live with multiple chronic illnesses. The video speaks from my heart, and I hope it can show people that sometimes we can be strong outwardly, but dealing with difficult feelings. If you know someone who is chronically unwell or disabled, reach out to them- you could be making a huge difference to the day just by saying "how are you?".
I would like to thank all the neighbors and friends that came over to see my little brothers Christmas lights display as well as enjoying mince pies and gingerbread men and of course hot chocolate with marshmallows and cream! The donations we received on the evening added up to over £100 and will all be a great help towards the build!
I apologise for not sending out my thanks sooner but please know it was so gratefully received! I also appreciate the fact you came and stood in the cold and wind to listen to myself and my family. The support and kindness shown was overwhelming and will not be forgotten.
At the end of 2014 I was diagnosed with Ehlers Danlos Syndrome. This was a suspected diagnoses for quite a while but due to its rarity and doctors lack of knowledge of EDS the diagnoses period was a lengthy and frustrating time for me and my family. Many doctors do not have an understanding of EDS and this caused me to have to see multiple specialists in the same field before seeing a knowledgeable Geneticist and Rheumatologist who confirmed my diagnosis.
In some ways it has been a relief for me to have an explanation as to why my body is reacting in the way it is but also brings a lot of overwhelming emotions to deal with as EDS is a life long illness and usually symptoms worsen as time goes on.
I do work very hard to remain positive and see the good side of every situation, and despite the constant pain and symptoms I have to deal with, I still like to see myself as someone who goes out of their way to be there for others during difficult times and support individuals going through similar journeys to my own.
I now rely on an electric reclining wheelchair, this is a vital aid to my mobility and independence and ensures I can be safely handled when I have a seizure so that I do not cause more damage to my joints than is already present. The electric component of the chair means that I no longer have to self propel and use precious energy. I was really suffering with more shoulder dislocations and wrist pain when I was self propelling but since moving to an electric wheelchair this has lessened. Any relief from symptoms is really important to me to manage my pain effectively without over using opiates as a means of pain control. It is vital tomy emotional well being that I am able to get out and about and have a level of independence that any young adult craves.
Ehlers Danlos Syndrome will always be a part of my life, but it will not be me. I am still the Chloe I always was and refuse to lose my identity to an illness!
Postural Orthostatic Tachycardia syndrome is an intolerance to being upright. When Chloe stands up her heart races, she feels dizzy, faint and nauseas. If Chloe does not sit back down there is a possibility of her fainting.
Food is not pushed through Chloe’s digestive system effectively so eating or drinking causes severe stomach cramps and vomiting. Because Chloe now cannot eat or drink anything she now having to be fed via a tube which bypasses her stomach and goes directly into her small bowel. This means being connected to a pump in a backpack for 24 hours a day. Chloe has had surgery to have a jejunostomy tube fitted permanently through the skin on her stomach directly into her small bowel.
The Dysmotility of Chloe’s large bowel, requires regular intervention. As it does not work on its own effectively, it means Chloe will need to take strong laxatives for the rest of her life. This is debilitating for Chloe, and strong laxatives make her bowels unpredictable. Chloe's small bowel is also very sensitive and she frequently get's blockages- which means she has to go to hospital.
Myalgic Encephalomyelitis causes Chloe persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. Chloe sleeps for many hours of the day and all night, yet still wakes up exhausted. Chloe feels mental exhaustion as well as physical, meaning she cannot even concentrate on simple tasks.
Joint hypermobility causes long-term joint pain and fatigue, a condition that features joints that easily move beyond the normal range expected for a particular joint.
Fibromyalgia is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also have: increased susceptibility to pain, Fatigue and muscle stiffness. Chloe suffers with all these symptoms.
Addison’s disease is a rare disorder of the adrenal glands. It affects the production of two essential hormones called cortisol and aldosterone. Chloe is now on steroids to try and replace her own levels. Without them it would have dangerous effect on Chloe’s body. Meaning she could go into a dangerous state called 'Adrenal Crisis'.
I hope this has given you an insight into the day to day struggles Chloe has to live with, as a 19 year old girl.
Because of the amount of pain Chloe has suffered, the nerves in her legs shut down and this is a very difficult process to reverse. Chloe is not able to move at all from the waist down and relies on being hoisted and using a wheelchair.
We would like to say big a big thank you to:
- Tim Flavell who Collected £134 from the kind staff at NFU Mutual Woodlands IT Dept Woodlands. Thank you, we appreciate your help, support and kindness so much.
£210 was raised by Adara Diva Hair Boutique and Tillyrose beauty salon both of High Street Bidford on Avon. Thank you Ladies! we appreciate everyones generosity who donated to Adara diva and Tilly Rose.
We would also like to Thank Corie Anziano for donating the amazing amount of £1000...We love you!
Binton Social Club you really touched Chloe's heart being the first fundraiser she could actually attend herself. They raised a fantastic £300 and really got into the fundraising spirit.
£110 was also raised by Josie Williams and family. Thanks guys!
And to everyone else who has donated, we are so eternally grateful!
Hi, welcome to our shiny new website. This is a place to draw together all the existing fundraising pages for Chloe. Most of the links you need supporting Chloe our found at the bottom of the page, but there is one important link missing....Chloe's very own blog! You can find Chloe's blog at:
Another really important link you may like to have is Chloe's fundraising page. You can reach this at: