The story of Hannah
I was born with a condition known as Hypermobile Ehlers Danlos Syndrome (hEDS) – a connective tissue disorder where the body produces faulty collagen. Collagen is the protein in the body that holds muscles, tendons, and ligaments together – when this protein is produced “faulty” it wrecks havoc on the body. While I was born with this conditions – and have shown signs of it since birth – I wasn’t officially diagnosed until I was 23 years old. Ehlers Danlos Syndrome has 13 different types – all of which can be genetically marketed with a gene mutation. That is – aside from the type I have: Hypermobile EDS – which doesn’t have a known genetic marker at this time. Hypermobile EDS can cause problems throughout the entire body – because collagen is found everywhere. Since birth I have dealt with issues that we just thought was “life according to Hannah” – we didn’t know it was all due to my EDS. Some effects of the condition (some of which are secondary conditions) are: cataracts, glaucoma, torn tendons, osteopenia (making it easier for my bones to thin and break), velvet-like soft skin, urinary problems, dental demineralization (causing me to lose all of my teeth at 22 – despite having great dental hygiene), cervical instability of my spinal cord (leaving me in a neck brace), easy bruising, chronic pain, fatigue, hypermobile joints, gastrointestinal dysfunction, brain fog, temporo-mandibular joint dysfunction (TMJ), joint dislocations and joint subluxations (partial dislocations), and the list continues. Today, I am 25 years old, and am in a wheelchair for multiple reasons – but mainly due to frequent joint subluxations and severe pain when walking. I now have non-epileptic seizures which are most likely caused by lack of blood flow to the brain due to cervical instability – which is caused by EDS. I now wear dentures (tops only – bottoms won’t fit due to a very high pallet and abnormally small jaw – which is a feature of EDS) and wear various braces and splints to basically hold my body together (the help prevent joint dislocations and subluxations). While hEDS has taken over my life and the way I live it – I still don’t let it effect doing the things I love: writing poetry. I have already has several of my poems posted on various websites including the Dysautonomia Support Network, the Uncommon Spoonie, among others. I was also nominated for the Rising Star Award at the Dyautonomia Support Network’s Patient’s Star Awards of 2019 and my poem was featured in the Ehlers Danlos Society’s Talent Show in 2020. I have not let my EDS effect my love for writing – despite the fact that writing (and typing) is quite painful due to subluxations of my fingers and wrists. Writing poetry is my passion and I won’t let anything stop me from writing.
You can find me on Instagram: @chronically.challenged
You can also find my personal Facebook page/blog:
“Chronically Challenged: Finding Myself Through Chronic Illness”