Recently we shot with the lovely Ayesha who has the condition EDS and to be honest we didn't know much about the condition so wanted to find out more and how it impacts people who have the condition on a day to day basis.
We then found out May is EDS & HSD awareness month so we wanted to do our part.
We reached out to our lovely followers and customers who also have the condition to find out more and spread awareness of EDS and HSD.
What is EDS and HSD?
Ehlers-Danlos syndromes (EDS), and hypermobility spectrum disorders (HSD).
The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins.
They are generally characterised by joint hypermobility (joints that move further than normal range), joint instability (subluxation (partial separation of the articulating surfaces of a joint)) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor. In the rarer types of EDS, there is also weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture.
We chatted with the awesome @chronicallyjenni to find out more about living with the condition.
Being a babe with a mobility aid hasn't always been plain sailing. At first I kind of resented the fact that I needed one especially at such a young age. They aren’t always the prettiest things and it can make you feel a bit rubbish sometimes. But after decorating my first mobility aids and then finding companies which make beautiful mobility aids it's made me much more confident, and I hope that I can pass that on to other people and empower them to use their mobility aids with pride. I think it's really important to see people having pride in their mobility aids, they're not something to be ashamed of, and I love that more people now ask about my mobility aid because of it’s beauty rather than question the reason that I've got it.
The one thing that I really wish other people knew and understood about this condition is the uncertainty of it and the only way that I can find to relate that to someone without a chronic illness at the moment is the pandemic we’re all still living through. For the past year we're all living in the unknown and that's scary we're upset about the things we're missing whether that's birthdays or weddings or holidays or work or education, we’ve adapted but it’s still super tough, especially not seeing friends and family as much as we’d like. We’ve all been fighting this invisible enemy as best we can but for those of us with EDS and other chronic illnesses that's our lives every single day we're just sitting and waiting it for the next attack not knowing how we're going to be and what symptoms are going to come up from one day to the next. For those of you lucky to have your health this uncertainty will eventually end but for us it never will. I also have a great video on my youtube channel from last year featuring people with EDS & HSD from across the world talking about all the things they wish people knew about EDS and I’d love it if you could watch it and understand a little more.
The tough thing about living with an invisible illness is that people just can't comprehend it. They can't comprehend how someone can look absolutely fine yet being such extreme pain, so they don’t believe the pain exist. The condition may be invisible, but it is not imaginary! People also cannot comprehend the variability and how someone may need an aid or other assistance on one day but maybe not on the next. Sometimes I really wish I could give other people my symptoms literally just for a minute just so they could experience it and understand what it feels like to live in my body 24/7.
It's unfortunate but living with a chronic illness means that your fashion choices can become limited. Everything has to be comfortable so sometimes you have to compromise style over function. Most days I do pretty much live in my pyjamas but I love fashion, I love floaty dresses ,I love prints and different fabrics and wearing a great outfit when I'm feeling up to it always improves my mood.
You can follow me on Instagram @chronicallyjenni and also over on YouTube as chronically Jenni as well. If you want to learn a little bit more about EDS and what it's like to live with this condition my YouTube is a really great place to start. For awareness month, I've put together a series, like I do every year, involving people with Ehlers Danlos syndromes and hypermobility spectrum disorder from around the world to hopefully give people a better understanding of these conditions and what they like to live with. www.youtube.com/c/chronicallyjenni