01 Oct Connective tissue disorders – Hannah’s story
On the outside, I look like a normal healthy 30-something-year-old. Many people don’t know that I have a connective tissue disorder called Ehlers-Danlos Syndrome, hypermobility type (hEDS).
The way I usually explain it is that I am like Elasta-girl, the mum from The Incredibles! I am not a superhero, but I am stretchy. I demonstrate this by bending my fingers back and then I finish my presentation by showing how weirdly soft my skin is (like velvet!).
Truthfully, this is a huge oversimplification so as not to bore people or make them worry about me. Being flexible isn’t all it’s cracked up to be! The reality of my condition is a whole bunch of joint pain, fatigue, anxiety, injuries, and many other symptoms that I manage. So today I thought I would crack open a conversation about connective tissue and a little bit about my experience. Hopefully, it could help someone out there, including health professionals, to know a little bit more about people like me!
What is connective tissue?
The human body is made up of 4 types of tissue. Connective tissues are essential for us to function and have 4 major roles, to connect, protect, transport fluids and nutrients and defend us. Connective tissues include our bones, tendons, cartilage, fat, blood, arteries, lymph, and more. This makes up a large chunk of our body, some connective tissues are solid, others are liquid, some are stretchy, and others squishy.
If someone has a connective tissue disorder, that often means they have a lot of problems. It also means it may not be obvious from the outside. There are over 200 different kinds of connective tissue disorders. Some are inherited like EDS, Marfan’s syndrome, and Osteogenesis imperfecta. This means that a person has the gene already programmed at birth. Others are caused by an auto-immune response or your body attacking itself, like rheumatoid arthritis and scleroderma. There can be a huge variation between the severity of symptoms and systems affected even in 2 different people with the same connective tissue condition.
What is Ehlers Danlos Syndrome?
There are 13 subtypes to this condition but here is what we all have in common:
- Hypermobile joints- joints that stretch further than normal
- Skin hyperextensibility – skin that stretches further than normal
- Skin fragility- we bruise like a peach!
I officially got my diagnosis this year, but it was a swimming coach and a Podiatrist who were the first people to recognize I had hypermobile joints.
My parents noticed that I sat funnily on the floor and how clumsy I was. I was always covered in bruises and somehow I would trip myself over when I was running. My swimming coach pointed out that I struggled to control my limbs and that I had very flat feet. I was lucky to get a lot of early intervention from different health professionals. My podiatrist made me orthotics and helped me choose the right shoes to support my feet and ankles. A physiotherapist helped me learn how to get up off the ground correctly to protect my joints. They gave me exercises to strengthen my core and rehabilitated my numerous ankle injuries. These people who helped me are a big reason I became a health professional, particularly a Podiatrist.
Throughout my life when I have had hormone changes I have struggled with flare-ups in joint pain. A rheumatologist was the one who joined the dots with some of my other weird symptoms like passing out, difficulty breathing, a racing heart, spontaneous vision problems, and unquenchable thirst/severe dehydration. For years I could find excuses to explain all these things away, but now it all makes sense!
Unfortunately, it often takes people years or even decades to get a diagnosis and the help they need. This is a relatively uncommon group of conditions, so many health professionals might not have the answers for you straight away. This can be extremely frustrating. Most people with this condition will have stories of health professionals not listening to their concerns, and telling them their pain is in their head. Some people with EDS have been diagnosed with “fibromyalgia” or “chronic fatigue” at some point.
I understand these frustrations first hand and I would love to spread awareness and educate more health professionals on hypermobility and EDS. I would like the opportunity to aid people like me, to find supportive shoes that don’t look ugly, to help them achieve their physical goals, and to listen to and support them. I am also part of several groups that can offer more information for those that are interested.
- Easy bruising: if a person is not on blood thinners and their iron level is fine, this should be a red flag. For years when I have mentioned this to GPs I was ignored.
- History of multiple dislocations, subluxations, tripping/falling/general clumsiness, especially at a young age, and trouble standing for very long.
- The kids with party tricks – popping shoulders out, “double jointed” fingers, contortionists.
- POTS-Postural Orthostatic Tachycardia Syndrome- lightheadedness/racing heart rate when you stand up, sometimes passing out or just feeling like you can’t stand up anymore. A nice little summary in the video below Are is well worth 4 minutes of your time.
None of this will stop me from doing what I want, but it will change how I do it. I still play touch footy, I still hike, I love riding my bike and I’ve recently got back into surfing. I know if I want to play multidirectional sports (Netball is my favourite), I risk dislocation and injury but so does everyone else. I have to stay strong around my joints and in my core, rest when my body needs it, and avoid putting on weight . . . as everyone should get the best out of their body. Will I be able to wear a sexy pair of high heels comfortably? Never. Do I sometimes wear them anyway and bring a spare pair of flats in my bag? Absolutely.
If you have any questions, I am an open book and would love to chat. If you think you or a loved one is hypermobile and needs a little more support in their footwear, come on in for a no-obligation assessment. All I can say is that it has helped me, and I would like to do my best to pay it forward.
Book an appointment online today or call 5479 1211 and Vicki or Lyn can arrange an appointment for you.