Hey guys, it's Lydia - also known as Quinzelle - and welcome to my first, debut article! Be kind to me
For my topic, I decided to write about something that is close to my heart and personal. I thought I'd let you guys into a part of me that not many know about or fully understand and along the way, raise awareness of a common yet misunderstood condition. It may not be as light-hearted as you hope but I hope you all enjoy it and look forward to future articles.
Before I begin, I'd like to thank Krystle for the amazing layout and Fiskarna for the awesome coding! The layout was inspired by the Zebra print awareness ribbon. The ribbon for Joint Hypermobility falls under the same for Ehlers-Danlos, as do multiple others, due to it being the ribbon for raising awareness of Connective Tissue Disorders.
Joint Hypermobility Syndrome (JH) is a rather complicated yet common condition. It can be stand-alone, or it can be part of other syndromes such as Marfan and Ehlers-Danlos, both of which are fairly rare yet dangerous. There have been arguments of whether JHS is a form of Ehlers-Danlos but that has yet to be proven. All of these syndromes fall under a category of Genetic Disorders of the Connective Tissue due to them all affecting the tissue in similar ways, though on different levels, and for being passed on through genetics to the individual. I'm going to be talking about JH from a stand-alone perspective as this is what I personally suffer from and know the most about.
Hypermobility means that some or all of a person's joints have an unusually large amount of movement, into positions which are impossible for others - it is commonly mistaken as being "double jointed". If you are "double jointed", you have a hypermobile joint. However, this doesn't necessarily mean you have JHS.
It is not known, exactly, what causes JHS though it is largely believed to be when there are genetic changes to the protein, Collagen - a protein which connects two bones together at a joint. If this collagen is weak, body tissue is fragile causing joints and ligaments to become loose and stretchy.
Some people may have Hypermobility yet not suffer from it. They may be lucky and just simply have hypermobile joints, in which case it is beneficial to people such as gymnasts and dancers. However, some do suffer and are usually the ones classed with the syndrome. Some people have all of the symptoms. Others may only have a few.
Symptoms include:
Pain and Stiffness in the joints + muscles
Clicking Joints
Joints that dislocate easily
Fatigue
Night pains
Recurrent Injuries (sprains, for example)
Digestive System Problems
Dizziness and Fainting
Thin/Stretchy skin
Poor Coordination
Other Symptoms, though not always common, can include:
Varicose Veins (swollen/enlarged veins)
Headaches
Flat Feet
Drooping Eyelids
Do you have it throughout your whole body?
It changes from person to person. For me personally, I have it in my: jaw, shoulders, elbows, wrists, fingers, hips, knees and ankles. Some people have it in more, such as their back and toes. Some have it in just one or two joints. I have it worst in my knees and hips.
Is it dangerous/life threatening?
No. Having just JHS means that you can still lead a normal life. It requires changes and informing people of different things but you won't die from it and you can still live independently. The only risk is that it can increase your chances of arthritis in later life.
How does it affect you?
In terms of how my joints 'bend', I'm unusual. I'm able to turn my legs inwards by 180 degrees, touch my head with my feet and be my own backscratcher! (Fun fact: I never knew why backscratchers existed as I thought everyone could reach). The downsides though are that I have flat feet (no high heels for me), tired all the time, can't write for longer than 5 minutes on bad days and, because I have it in my shoulders and hips, I get a lot of tension in my back and neck, so I suffer from bad stiffness in those areas. I also get bad tension headaches because of that and the lack of sleep. My knees also point inwards when I walk - that's a little odd and annoying.
Wow, this makes me sound really bad... let's move on!
How often does it affect you? Does the pain vary?
Completely. Some days, I feel completely fine and invincible! Then there's others when all you want to do is cocoon yourself in bed, and you basically drag yourself around, if it happens you have to leave the house that day. Some days, there's a bit of clicking now and then but nothing terrible. It completely varies and does just rely upon taking each day in its stride.
'But, on the outside, you look completely fine!'
This isn't a question frequently asked, but I know it's one that people would love to ask. In which the answer is yes, a person with JH looks perfectly healthy on the outside but, they are likely to not feel that way. It is definitely one of the harder things to deal with, trying to explain to someone that you're having a rough day - not that you're simply feeling lazy, though I get those days a lot too .....
However, I take this opportunity to remind people that: you don't know what different people are dealing with. Whether it's JH or something completely unrelated, a lot of the time - there is more to a person than meets the eye!
For me, this is something that has slowly gotten worse as I got older. As a kid, I was fairly normal, just 'double-jointed' then I began; writing slower, ran slower, aches everywhere, became tired and appearing to be lazy. I didn't know what it was. I thought it was a part of growing up and that I'd grow out of it. I began to realise how big of a problem it was around 3 years ago when I took a 2-hour mock exam, and my whole right side began seizing up with pain. I had to keep writing, and I didn't have time to stop though my hand wouldn't let me and kept becoming limp. By the end, my arm was practically numb and incredibly stiff. Luckily it wore off within around 2 hours, but it was something I didn't want to experience again. I never let it get that bad. Even then, I still didn't know what was wrong. It took a year and a half after that to find out, finding out last February what it was, after many years and much pain. It was hard to diagnose me for so long as it turns out, my body doesn't bend in the typical ways. For example, a lot of people have it in their thumbs, but I have it in all of my fingers but not my thumbs. Weird, huh?
Since finding out, things have gotten easier. For me, I'm lucky enough that my joints don't dislocate (though I've probably jinxed it now..) so the condition is largely little things that add up to make a lot of crappy things. Such as having to change the way I revise as I can't write for long periods of time anymore, not being able to open my own bottles, having to accept that I need aid during my exams etc. But things could be a lot worse. A heck of a lot worse. I find the condition always tends to sound a lot worse than it really is too.
I hope you enjoyed the article and learned something new! If you are also a fellow sufferer, then I hope this brought you comfort to read that you aren't alone in this.
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