There are various types of EDS (or Ehlers-Danlos Syndrome) and I have type III or hypermobility type. There are a few different names for EDS including Cutis hyperelastica and Benign Hypermobility syndrome. People with EDS are knows as Zebras, Medical Zebras or Genetic Mutants.
EDS is a disorder of the collagen, a group of proteins that make up the connective tissues of the body. This means that EDS, especially the form I have, affects my joints, muscles and ligaments severely. I suffer from dislocations of the majority of joints in my body which have caused me to undergo 8 surgeries to date with the ninth occurring in a few days and the tenth and eleventh already in the planning stages. As well as frequent and painful dislocations EDS means that I have soft, stretchy and easily torn skin, frequent spasms of the hollow internal organs such as the stomach, bladder, bowel heart and lungs (not much fun at all!) and severe osteoarthritis in at least 3 joints. It also means that I have constant pain because any activity from walking to turning over in bed can result in dislocation and soft tissue damage such as bruising or torn muscles and ligaments.
The best part of EDS is that there is no cure or even an effect treatment yet so it is basically treated with maintenance. This involves constant physiotherapy, which I began at age 11 well over a decade before my official diagnosis, pain killers, careful monitoring of joint movements and use of adaptive equipment. This equipment can be anything from wrist splints (I have a couple of rugged steel enforced ones for walking with crutches or lifting anything as well as a beautiful moulded plastic resting splint to immobilise my hand at night), to crutches, to special cutlery, to a bath board enabling me to maintain some semblance of independence. Or at least that is the theory; it is currently taking quite a while for certain adaptations such as the cutlery and bath board to arrive. I also have my own Mobility Scooter, he is a red Rascal 3 wheeler called Rory, not exactly the first car I dreamed of but he gets me around!
Living with EDS has a lot of low point, the hardest of which for me to accept is the fact that these days I have to ask for help with the simplest of things and I really don’t like asking for help! It is a difficult, crippling and degenerative condition and it is genetic so I know that there are certain things I may never have the chance to do, most of which I have either learnt or am learning to accept. It also means that sometimes I have to work a little but hard to achieve things that used to be east-for instance my typing speed has reduced dramatically, certain days I can’t use a knife to prepare food, I no longer eat anything that requires cutting on a plate and certain days it takes all of my energy to get out of bed so my only option is to not get up. It can be a rough journey at times and is frequently frustrating but it is the only life I have and I will continue to work hard to battle though it.
I guess the last thing I have to say about EDS is that it is fundamentally an invisible illness. In the time between surgeries when I can maybe walk ok and more about better a lot of people have no idea that there is anything going on. In fact until I ended up on long term sick leave the majority of people at my very active job didn’t know there was a problem at all. But EDS is there all the time. Regardless of how good a day is the pain is still there, all day every day. Sometimes I may look like I’m doing fine but it’s hard to explain that your stomach or bladder or bowels are spasming and that it is a less than enjoyable experience. Sometimes it’s hard to explain that I just need to hit myself in the chest to convince my heart to calm down and start beating again. This is the problem of invisible diseases and EDS is not the only one. I have many friends who suffer from IBS (including myself thanks to the ever joyful spasms), anxiety and depression. Now I have no personal experience of how the last two conditions affect people but I do have personal experience of living with a silent or invisible illness and I do have an idea of what it is like to go through life pretending that everything is ok because that is what is expected of you. Because there still exists such a stigma on ‘disabilities’. If I had to fill in a form asking if I was disabled today the answer would obviously be yes, I can’t walk without 2 crutches and wrist supports and I rely on medications to keep me going but if someone were to ask me the same question 8 months ago the answer would probably have been no because my physical symptoms weren’t as bad. The correct answer would be yes I am disabled and it should be an answer I could happily give without fear of being looked at differently.
EDS is a disorder of the collagen, a group of proteins that make up the connective tissues of the body. This means that EDS, especially the form I have, affects my joints, muscles and ligaments severely. I suffer from dislocations of the majority of joints in my body which have caused me to undergo 8 surgeries to date with the ninth occurring in a few days and the tenth and eleventh already in the planning stages. As well as frequent and painful dislocations EDS means that I have soft, stretchy and easily torn skin, frequent spasms of the hollow internal organs such as the stomach, bladder, bowel heart and lungs (not much fun at all!) and severe osteoarthritis in at least 3 joints. It also means that I have constant pain because any activity from walking to turning over in bed can result in dislocation and soft tissue damage such as bruising or torn muscles and ligaments.
The best part of EDS is that there is no cure or even an effect treatment yet so it is basically treated with maintenance. This involves constant physiotherapy, which I began at age 11 well over a decade before my official diagnosis, pain killers, careful monitoring of joint movements and use of adaptive equipment. This equipment can be anything from wrist splints (I have a couple of rugged steel enforced ones for walking with crutches or lifting anything as well as a beautiful moulded plastic resting splint to immobilise my hand at night), to crutches, to special cutlery, to a bath board enabling me to maintain some semblance of independence. Or at least that is the theory; it is currently taking quite a while for certain adaptations such as the cutlery and bath board to arrive. I also have my own Mobility Scooter, he is a red Rascal 3 wheeler called Rory, not exactly the first car I dreamed of but he gets me around!
Living with EDS has a lot of low point, the hardest of which for me to accept is the fact that these days I have to ask for help with the simplest of things and I really don’t like asking for help! It is a difficult, crippling and degenerative condition and it is genetic so I know that there are certain things I may never have the chance to do, most of which I have either learnt or am learning to accept. It also means that sometimes I have to work a little but hard to achieve things that used to be east-for instance my typing speed has reduced dramatically, certain days I can’t use a knife to prepare food, I no longer eat anything that requires cutting on a plate and certain days it takes all of my energy to get out of bed so my only option is to not get up. It can be a rough journey at times and is frequently frustrating but it is the only life I have and I will continue to work hard to battle though it.
I guess the last thing I have to say about EDS is that it is fundamentally an invisible illness. In the time between surgeries when I can maybe walk ok and more about better a lot of people have no idea that there is anything going on. In fact until I ended up on long term sick leave the majority of people at my very active job didn’t know there was a problem at all. But EDS is there all the time. Regardless of how good a day is the pain is still there, all day every day. Sometimes I may look like I’m doing fine but it’s hard to explain that your stomach or bladder or bowels are spasming and that it is a less than enjoyable experience. Sometimes it’s hard to explain that I just need to hit myself in the chest to convince my heart to calm down and start beating again. This is the problem of invisible diseases and EDS is not the only one. I have many friends who suffer from IBS (including myself thanks to the ever joyful spasms), anxiety and depression. Now I have no personal experience of how the last two conditions affect people but I do have personal experience of living with a silent or invisible illness and I do have an idea of what it is like to go through life pretending that everything is ok because that is what is expected of you. Because there still exists such a stigma on ‘disabilities’. If I had to fill in a form asking if I was disabled today the answer would obviously be yes, I can’t walk without 2 crutches and wrist supports and I rely on medications to keep me going but if someone were to ask me the same question 8 months ago the answer would probably have been no because my physical symptoms weren’t as bad. The correct answer would be yes I am disabled and it should be an answer I could happily give without fear of being looked at differently.
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