01/02/2026
For those of you that have followed my page for a while you will know I’ve been dealing with various health problems.
Well I have a diagnosis.
I have a condition called Ehlers-Danlos Syndrome. This is the name for a group of genetic changes that affect connective tissue. There are 13 types of EDS.
The type I have is hEDS, this is the most common type caused by a dominant gene which means it only has to come from one parent.
How it affects me personally;
Generalised Hypermobility- My hips and waist are unstable, this can cause pain mainly at night. My joints click frequently. Flexibility can be trained, yet there are certain things I have always been able to do without training.
Skin Hyperextensivity- My skin is unusually stretchy, bruises easily and heals slowly.
Dysautonomia- Tachycardia, dizzines, temperature deregulation, insomnia.
Headaches
Lightheadedness
Anxiety
Depression
Autism, ADHD traits,dyslexia, dyscalculia
Vascular Traits- Arrhythmia, Reynolds Disease, haemorrhaging problems.
GI Issues- IBS, cramps, bloating, flare ups.
MCAS- Mast Cell Activation, this causes a certain group of cells to react to things, causing food intolerances, allergies.
Piezogenic papuels of the heel.
I’m still trying to get my head around all this and I haven’t included everything I suffer with in the post.
The Zebra 🦓 association. This is because it’s unusual and health professionals have to think outside of the box to diagnose this. The symptoms appear so random. If someone told you to think of an animal with hooves you wouldn’t think zebra first right?
The symptoms are so random because it’s collagen production that is affected, collagen holds literally everything together in the body.
The good news is knowledge is power, the bad news is it’s incurable as it’s a pathogenic genetic mutation. I can learn to manage it though and raise awareness. I think a lot more people have this than we think.
More posts to come in the future, probably. 🥰🦓❤️🩹