I have rare health conditions named vascular Ehlers-Danlos syndrome and cerebral cavernous haemangiomata. I also have fibromuscular dysplasia as well.
Symptoms-wise I bruise very easily and never heal properly from wounds, plus I have thin translucent skin. Spontaneous pneumothoraxes (collapsed lungs) are very common too of which I've had about six in the past, as well as a renal artery dissection.
This condition affects roughly 1 in 50,000 to 1 in 200,000 people so there's very few in the world with this condition and there is no cure - all we can do is just be careful of what we are doing with our bodies.
It was June 2020 that I got my diagnosis and it came as a shock to receive the news. I was immediately unable to return to work because of my lifting restrictions given by the medical professionals.
I am not allowed to do any heavy lifting or physical strain as this places a high risk of hollow organ strain or vascular rupture as the collagen doesn't get created properly because of this DNA malfunction.
This has greatly impacted my life as I am no longer employed but my employer was really supportive and is wanting to stay in touch.
I want to raise awareness in New Zealand as it’s not common and not many specialists have even heard of the vascular type of it. My mum has tested positive too and my siblings haven't been tested yet.
I am trying to enjoy every day and be positive and I really appreciate all the support and love from my friends and family.