“No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome.” Professor Rodney Grahame.
When I read this I am shocked and saddened to the core, you may think this statement is incorrect but Professor Rodney Grahame is the top UK specialist in the field of Ehlers-Danlos syndrome, and unfortunately his statement is true. I am one of the many EDS sufferers who lives with the MOST NEGLECTED disease in the entire history of modern medicine. This may seem like an exaggeration, you may think to yourself, it can’t be that bad, but it really is that bad. However until you live with EDS, the level of suffering and neglect we face is unimaginable, but frankly I’m happy for those reading this who don’t fully understand as I would never want you to go through the horrendous symptoms EDS patients face on a daily basis.
“EDS is a collection of inherited conditions that fit into a larger group known as heritable disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones. There are different types of EDS, but they have features in common. These can include joint hyper-mobility, stretchy skin and tissue fragility. The fragile skin and unstable joints often found in EDS are the result of faulty collagen. Collagen is a protein in connective tissue which acts as a ‘glue’ in the body, adding strength and elasticity.” (Ehlers-Danlos Support UK 2013) Since collagen is a vital structure in our bodies, EDS can lead to multi-systemtic symptoms such as problems with joints, skin, eyes, gums, muscle, tendons, ligaments, blood vessels, organs and much more. Symptoms can include chronic, early onset, debilitating musculoskeletal pain; dislocation of joints; stomach issues; arterial/intestinal/uterine fragility or rupture; scoliosis at birth and scleral fragility; poor muscle tone; development of bone structure, heart problems; fainting and other autonomic symptoms; and gum disease. However symptoms and severity differs from patient to patient.
This is only a slight overview of the monster known as ehlers-danlos syndome and once it came thundering into my life everything was turned upside down. I went from doing dance classes and different sports everyday of the week to not being able to stand up without either falling over or dislocating a joint. Hospital admissions and many surgeries became my norm at 13 years of age. I rapidly lost my mobility and use of both arms at legs, I was crippled with fatigue and other random symptoms. I went for over 5 years not knowing what was actually wrong with me, medical professionals accused me of faking my symptoms, others thought I was looking attention. I lost friends and learnt many life lessons and went through many experiences that no young teenager should have to deal with. I missed a lot of school and learnt to educate myself and most of all I missed out on those all important years of growing up as a teenager and socialising with others.Now I’m sitting here at almost 23, I am paralysed, I have endured 11 painful operations and many hospital admissions, including spending weeks at a time in a hospital in London. I have limited arm movement and no movement in my legs, having to rely on a wheelchair all the time. I suffer from daily dislocations, multiple seizures each day, intense pain, fatigue, stomach and bladder problems plus many other symptoms. I cannot wash or dress myself and rely on my mum and carers to do almost everything for me. My house is no longer suitable and I’m currently sleeping in a hospital bed in the living room. EDS has not just affected me but caused havoc for my whole family.
However don’t get me wrong, EDS has made me the person I am today. Most importantly I found Jesus as my Lord and Saviour and by His grace He has carried me through the last 10 years of this illness. I’ve grown and learnt precious life lessons, the things I’ve seen and experienced has made me the person I am today. Whilst I lost my ability to dance, I found my ability to sing. I’ve been able to record CD’s, write blog posts, share how God has worked in my life with others and have been able to start craft which I’m grateful to have been able to share with others. Yes I’ve lost friends but I’ve gained true friends, friends for life and realised one or two precious friends are better than 6 or 7 fake friends. Life has been tough and certainly not what society would expect as the ‘norm’ for a 20 something year old girl, but instead I’ve grown closer to my family, an unbreakable bond and my mum has become like a best friend; I would never swap the last 10 years of my life for anything else as the relationship I’ve gained with mum is so precious. I’ve missed so many opportunities but gained important others and in all of this I owe it all to God. It isn’t myself that has got me through any of this, but by the grace of God that I’ve got through these last 10 years and I wouldn’t get through each day without Him.
Yet whilst there has been positive experiences during this battle, these good things have happened despite the suffering but unfortunately the suffering has never went away. I’m thankful for a lot and genuinely can say I am thankful for whatever circumstance I have went through or will go through in the future as I know that it is God’s will for me. But the truth of the matter is the suffering is still here. Everyday there is not a time when I am not in pain, my life is very different and to the onlooker it may seem a bit crazy that I have multiple seizures and dislocations each day and after they happen I just continue as normal. For most a dislocation alone is a massive thing, yet for me, sadly, it is my normal. I have so many questions regarding EDS and yet doctors cannot answer them, no one ever imagined I would end up with my legs paralysed from this, yet now I sit here unable to move. As a young adult I should be finishing uni, starting my career and driving a car, but instead as time goes by I’m losing independence rather than gaining. This is my daily reality and I don’t think I can ever get used to it.
Everything is so unknown and it is because there isn’t enough knowledge and information. Yet to have knowledge there needs to be research and to have research there needs to be money and people and awareness. People are dying from EDS yet we are overlooked, we are in desperate need of a cure yet nothing is happening.
I’ve went from being a happy healthy teenager to a 22 yr old suffering from multi systemic problems. I may look fine on the outside but on the inside its a very different story. Even with a diagnosis I am not treated any better from the medical profession. It may seem crazy to hear, but I have no main doctor looking after my care of EDS. In fact to even get some help and advice for management of EDS I have to go to London. I am so thankful I have my team in London but why is there no help for me in the country in which I live? At the moment I am suffering from significant new symptoms and yet I’m left to deal with it myself with no help and no advice.
For many all of this may not seem important, but for me and fellow EDS sufferers the chance to raise awareness of our illness and the destruction it causes to our daily lives is paramount in showing others the reality of EDS. You’re probably thinking, yes it’s important to raise awareness of every illness, and yes I agree with you; however EDS is different in that there is no research, as I said, sufferers are ignored and many go undiagnosed. We face misunderstanding and judgment from medical professionals and society alike. Many charities of illnesses raise millions of pounds each year to help with research and to help patients, yet people like me with EDS are left with nothing. All this focus on other well known illnesses portrays the message that people with EDS doesn’t matter. It’s not right that society deems one life to be more important than another. EDS is just as bad and just as life destroying, yet no one realises because again as I said there is no awareness and not enough knowledge.
EDS comes into a life and causes destruction, not just to the sufferer but to a whole family and friends, too many have lost their lives to this horrible disorder, yet we are still ignored. How much more suffering will I have to endure or how many more people will die before action is taken? We need research, understanding and treatment.
As I write this I feel such desperation for this matter, I’m not just writing this post for the sake of uploading this blog. Nor am I writing this just to have a post for EDS awareness month. I’m writing this with a sense of urgency and to plead with you to help me in taking action. Whether that’s through simply reading this post and learning about EDS, sharing this post with a friend, educating someone else on EDS or getting this topic of EDS going viral so that heads will turn and we force the government and health care profession to listen to us. That may seem like too big a goal, but why not? Let’s make a go of this and make a difference.
Now is the time to make our voices heard in the hope that it will help people like me, in the hope of change, in the hope to save lives and in the hope of a cure.
Thank-you to everyone who reads this, awareness is key and I really appreciate your support. I know I haven’t been around lately since becoming paralysed in January, life has definitely been difficult to say the least; but everyone has been wonderful and I really don’t deserve your kindness, support, generosity, time, compassion, care, love and friendship. I may have an incurable disorder, I may suffer each day and my life may be a lot different from what I had imagined, but I have Jesus and the best support team behind me cheering me on; and for that, I’m grateful.