Look, I’m no expert. But this illness? Yeah, f*cking bullsh*t.
And no, I am not negating the validity; this illness is all too real.
It just SUCKS.
Those who are suffering from Hypermobile Ehler’s Danlos Syndrome experience frequent joint subluxations, dislocations, extra-bendy joints and fragile skin. hEDS causes the connective tissues (i.e collagen and fascia) to become weak and unable to stabilize the body’s joints.
Small tasks and movements (opening doors, sneezing/coughing or grabbing objects) can lead to hEDS patients to suffer from subluxations/dislocations. Small scrapes can cause permanent scars and the slightest of bumps result in black and blue bruises.
Personally, when I’ve been tested using the Beighton Scale, 7/9 of my joints displayed hypermobility. I struggle with subluxations in my ribs, my left shoulder, vertebrae, wrists, knees and ankles.
Unfortunately, the symptoms of EDS don’t stop here.
There is another form of EDS, which is referred to as Vascular Ehler’s Danlos Syndrome (the arterial form). People with this form experience much more severe symptoms, along with those suffered by hEDS patients.
Because vEDS affects the body’s arteries, these patients can suffer arterial ruptures or dissections, ruptures of the uterus during pregnancy, collapsed lungs, etc. Sadly, the life expectancy of these patients is limited to about 10-51 years old (& most sufferers have experienced a major arterial event by the age of 40).
Ehler’s Danlos Syndrome is my most recent diagnosis as of September 2019, and I’m still working on educating myself. Luckily, I have appointments currently set with a fantastic team at Mayo Clinic (Phoenix) in January of 2020 to make this nonsense my biotch.
Although, I have been struggling with this illness, I could certainly have it much worse. I am working to feel grateful for the constant chiropractor and physical therapy appointments because I can manage my illness, without the fear of having a cap on my time here.
Since I’m a rookie at this point, I don’t have a lot of sage advice on this topic.
Just be kind.
To everyone, everywhere, no matter what. You never know what they’re going through.
I look forward to coming back to this matter as I become more knowledgeable with time and my appointments at Mayo.
Stay strong, zebras.