EDS | ebbandflowstudioart

Living with EDS

EDS is complex to explain to people and it's rare, this is my story.
The left side of the chart relates to EDS directly while the right side shows relivant Comorbidities.

Questions and Answers About Me

Heads Up

Just a quick heads-up: I have Ehlers-Danlos Syndrome (EDS), a genetic condition that affects the connective tissue in my body—like joints, skin, and internal organs—so they don’t function as they should. It can come with some challenges, but I’ve learned to manage it the best I can. I just wanted you to be aware in case I’m not feeling well, need to rest, have to step back from participating, cannot carry weighted things, can’t offer handshakes or hugs or if I am late or just can't make it at all. Please note all information on this page is my situation and opinion. If you want medical information please go to 'The EDS Society'.

Meeting People

Making new friends when you have a chronic condition can be challenging just putting yourself out there. It can feel scary, vulnerable, embarrassing and overwhelming.

Is it a Disability?

EDS occurs on a variant spectrum and affects each person differently in terms of symptoms and severity. Symptoms are often ‘invisible’ but can also fluctuate throughout one’s lifetime. My EDS is degenerative and has been medically diagnosed. It is a severe disability with many physical impairments and chronic health issues. Hyper-mobility on it's own is not EDS. However, EDS with Hyper-mobility is a connective tissue disorder.

Mobility

My connective tissue disorder means dealing with flare ups and injuries all the time. I use a wheelchair and walking stick as needed. There is actually a term, “ambulatory”, for those who use a wheelchair to help get around even though at some points they may be able to walk.

Have you tried this?

There is currently no cure for Ehlers-Danlos Syndrome (EDS). Collagen supplements are not effective for people with EDS, as the body breaks down all dietary proteins into individual amino acids and relies on genetic instructions—our DNA—to rebuild collagen. Since the issue lies within our DNA, supplements cannot correct the underlying problem. Certain treatments can pose serious risks. Steroid injections, for example, are generally not recommended due to the potential for complications like tendon rupture or nerve damage. Some commonly prescribed medications can increase the risk of aneurysms, and drugs such as opioids or anticholinergics can worsen gastrointestinal symptoms or contribute to conditions like gastroparesis. Invasive medical procedures also carry higher risks, including blood vessel rupture, excessive bleeding, poor wound healing or complications with anaesthesia. I truly appreciate when people want to offer help or suggestions but please know that I’m working closely with my healthcare team to make informed and careful decisions that are best for my health.

Some Random Facts

Travel is often very painful for me and sometimes not possible at all. I also face access issues when organizers aren’t willing to accommodate complex needs. My allergies are serious—gluten is the most dangerous, and my specialist has said it could be life-threatening.

I live with daily pain ranging from a 5 to a 10. Sometimes it's so severe I can't hold a conversation. Pain takes a huge amount of focus, so I struggle with demands or frustration from others—it can be overwhelming.

Typing and computer work can injure me, so long messages or documents are difficult. I also have immune issues so a simple cold can cause serious respiratory issues.

I’m grateful for my supportive husband. My family situation is complicated—most are estranged, except for my elderly mother and a cousin who is unwell.

Exercise and nutrition are the only things that help, but my diet can make social situations hard, and EDS makes exercise risky unless it's very gentle—and even then, there are no guarantees, so it is a never ending cycle of injuries and disfunction.

Further Information

Ehlers-Danlos Syndrome (EDS) is a rare genetic condition, so you may not have heard of it. It primarily affects women—around 90% of diagnosed cases—and currently, there is no dedicated EDS Society or government funding in Australia.

Tragically, it was recently reported that two women died overseas due to inadequate medical care related to EDS. And if that’s what is reported, how many more go unnoticed? In contrast, countries like the U.S., the U.K., and France have dedicated EDS societies that work to support patients, improve access to care, advocate for research, and foster collaboration across the medical community. Here in Australia, we have none of that support.

One of the most famous people believed to have had EDS is Elvis Presley. Had this been included in the recent film about his life, it could have brought much-needed global awareness to the condition. link

Other well-known individuals with EDS include:

Billie Eilish
Selma Blair
Halsey
Sia
Lena Dunham
Jameela Jamil
Cherylee Houston
Yvee Oddly
Rebecca Yarros