Being Told You Have An Incurable Condtion...

Finally getting a diagnosis comes along with overwhelming emotions. There is the relief that you have a diagnosis and know what is actually wrong and can begin looking into your exact diagnosis, which specialists to see and any treatmet options which are avaliable. But then you worry about the journey ahead and if your are ready to face it and what the future will hold.

The problem comes when you realise there is no cure, its not gonna go away and your not gonna get your life back. The pain and tiredness your living with is only gonna get worse and the treatment which you thought would come after getting your diagnoisis doesnt exist.

When you read and hear the words "no cure" your head just fills with questions and your brain just goes into over drive. You are constantly thinking "what do you mean no cure?", "am i gonna be like this forever?" and its something that even when you get your head round it you never stop thinking about it. You think how its unfair how some condtions that have cures and yours doesnt, why you have to have the one that doesnt have the cure and why in modern medicine anyone has to live with something that cant be gotten rid of or made better. But that's life I guess.

Now imagine how you feel when you have a really bad stomach bug and the flu, how unwelll and rubbish you feel for a few days and you just think "ughhhh why me?". Imagine feeling like this (probably worse) everyday! You have doctors appointments and hospital stays and testing after testing and still feel so unwell. You then finally get told whats wrong but find that your never gonna be fixed. Your never gonna get back the life that you used to have and the life that you deserve. You have to force yourself out of bed every day knowing now that its gonna be like that forever, your gonna wake up in pain everyday and force you body out of bed with every joint clicking like an 80 year old when actually your only 17.

Now imagine back to how you feel when youve got that really bad stomach bug and flu, you feel dreadful but you know in a few days time having spent your days in bed drinking plenty of water you will feel back to your usual self, but for those of us with incurable condtions we wont be rid of our conditions anytime soon, yes we have good days which we wished last forever but most days its a struggle to keep going knowing your just gonna feel this unwell everyday and theres no end in sight, keeping your postivity and motivation up can be a real struggle but thats just another something you learn to overcome.

Now most people don't understand how months and months on having had lots of surgery's and hospital admissions how your still so unwell and not getting better. In todays modern world we just expect that when we feel unwell or somethings not right that we can go to the doctors and they will give you something to make you feel better or help get you fixed but, when this doesn't/cant happen people get confused. Yes in most situations we are very lucky that you go to the doctors and they help fix and make you feel better they can do this because of all the research and studying that goes into everyday things like antibiotics clearing up common infections and years of evolution in medicine now means that people living with some medical conditions are living much longer and been cured of conditions and illnesses that 40 years ago weren't. The outcomes for lots of cancer patients have significantly improved due to scale of research that has happened to help save the lives of thousands of people. All of the fantastic medical treatments and services that are available today all come from research, research is at the front of every new medications and treatment that is available in our hospitals.

But research doesn't happen on its own it has to be funded. All these incurable conditions out there one day will hopefully have a cure. But cures only come from research and as ive said that needs to be funded, For there to be a cure for the main connective tissue disorder I have someone needs to fund the reaserch into it and how it can be cured. EDS uk are the charity that are trying to raise awareness of the condtion i suffer with, and also funding research into helping to find treatments and a cure for those of us who suffer .

Due to EDS being a rare condtion EDS uk is currently a fairly small charity compared to the more well advertised medical charities that exist today. For that reason they rely on donations to help fund the reaserch.

For this reason as a family we decided that we needed to begin fundraising as we need a cure and without donations one isn't gonna be found. So my dad is taking on the challenging of cycling from London to Paris in the hopes that he can makes lots of money for EDS uk through sponsorships to help fund research and to say thank you the support we have received in difficult times. He is cycling the long 350 miles to paris in just 4 days and hopefully will raise lots of money to help EDS uk out.

I am going to link my dads just giving page in this post and I would appreciate if people can donate whatever they can or if not can share on to social media so that hopefully one day we don't have to force ourselfs to get through everyday as there will be a cure so that there is a light at the end of the tunnel.

From this post I don't only want people to visit the just giving page but also to try and think about how not everyone is going to get that quick fix as there isn't a cure and maybe just think about things before they say things to someone with an incurable condition as it isn't the easy path to follow in life, although we do try our best.

Thanks for reading please share to help and get the awareness out there in the hopes one day we will have a treatment plan that may even one day lead to a cure.

Evie x

https://www.justgiving.com/fundraising/Douglas-Stanway