Hiya!

My name's Lauren, you probably already know that if you've clicked this link but in the chance that you don't, that's my name. I'm 24 years old and for the first 23 years of my life, I suffered from a condition called Ehlers-Danlos Syndrome. Basically, EDS is a connective tissue disorder, and without connective tissue, we would literally fall apart! That's what is happening to so many people across the world right now. Their bodies produce weak connective tissue, the glue to their bodies, and their joints slip out of place, their skin can be affected, their organs can prolapse and slip out of place, and for a lot of them, they're undiagnosed and told that they are drama queens! People with connective tissue disorders are put together with connective tissue that is like Pritt-stick, whilst normal peoples is like super glue!

Now, there are many types of EDS, but the most common and sadly the type that we haven't found a test for yet, is called Hypermobility type Ehlers-Danlos Syndrome. Also known as Joint Hypermobility Syndrome or Hypermobility Spectrum disorder. They haven't really all agreed on a name as of yet but that'll come with time. Some types affect the specifically the spine, the teeth or even the heart, which can be deadly.

The way hEDS affected my body whilst growing up was by causing my elbows to dislocate when I was under a year old, it causes my knees to bend back further than they should, resulting in my leg being broken in a freak bouncy castle accident. I also ended up with random injuries like fracturing my coccyx. It also affects my skin. I have very soft skin over a lot of my body, it also heals very slowly and scars very easily. I have a scar on my thumb from using a pair of scissors around 4 months ago when the handle was rubbing on my skin. It also affects my inner organs, like the intestines and stomach. As a child, I used to cry a lot after doing P.E. or highland dancing because it felt as though my knees were on fire. It felt like someone was injecting lava into them and when seeing the GP, we were told it was growing pains. Now I know that I was subluxing my joints and damaging the ligaments and muscles that were working so hard to keep me together when the connective tissue wasn't. It's good to know that I wasn't being overdramatic because I still have those pains every single day, and in lots of joints all over my body at the age of 24.

Since I was a teen, I've had lots of neurological issues. My vision is getting worse, I get really bad ringing in my ears, I get twitches and nerve pain in random places in my body. However, over the past few years, I've been getting less and less mobile, I've been having serious vertigo and nausea when upright for more than an hour. This does make it very hard to get things done. This also means that my EDS could be affecting my skull and spine.

My GP has had a CT scan done and it came back clear so he is unwilling to refer me to a neurologist. What I need and a lot of other NHS patients need is an upright MRI as it is when we are upright that the issues happen. For a lot of EDS Patients, we end up with conditions that go hand in hand with EDS like Chiari Malformation which is when the skull is putting pressure on the brain stem, Craniocervical instability, which is when the vertebrae in the very top of the neck are moving around causing much the same issue as the first condition I mentioned. It doesn't support the brain inside your skull. Essentially the brain is falling down out of the skull and into the neck, then causing issues with the spinal cord and brainstem.

Due to the underfunding in the NHS and strict budgets, they do not have the facilities for EDS patients to get these scans done. They also do not have any EDS Specialists. The only option for EDS Patients with these symptoms is to save up their money and go to a private clinic in London. This is an issue for many as with disability such as EDS, comes disability benefits, which is a whole other issue.

I receive £230 a month on PIP and sometimes £23-25 on Universal Credit. I also had to stop working 3 years ago due to a tumor causing nerve damage in my hand and also my EDS symptoms. Since then, I've been fighting for the disability benefits I should be getting and am having to go to Tribunal for the third time in two and a half years.

The package for the scans at the Medserena clinic cost £1250.00 and the one hour consultation with Dr Hakim costs £300.00. The remainder of the amount I'm asking for is for travel and accommodation. Since travelling in itself causes me a lot of vertigo/nausea and makes me vomit quite a lot if it's not just a small journey, I've got to travel by train or plane. I've also got to have my fiance James with me to help me as I struggle to walk a very far distance without needing to sit, so I would also have to rent a wheelchair for the journey as I don't have one myself. I've ended up with so much debt that I'm doing my very best to clear off. I dream about having a job most nights because at the moment I'm almost housebound. This is why I've decided to bite the bullet and ask for some help on this journey to get my complicated condition solved and to get myself back into a position to work again.

I would really appreciate anything anyone can help me with and I'm sorry that it's come to the point that I need help financially. I hope to pay it back in the future when I can help spread awareness about EDS and how neglected it is within the NHS. So many people are misdiagnosed and many have to figure it out themselves.

If you want to know more about the clinic in London that I'm looking to visit and the EDS Specialist I need to see then I'll include some links below.

Even if you can't donate, please share it with the community, I can't be more grateful for any help I receive.

http://alanhakim.com/private-practice/ - Dr Hakim, one of the leading specialists in the UK.

https://www.trulyopenmri.com/about-our-truly-open-mri/ - The Medserena Clinic who offer an EDS package for the Upright MRI scans.

https://www.ehlers-danlos.org/ - The EDSUK Website

http://thezebranetwork.org/craniocervical-instability - Information on CCI