Rare Disease UK
“You’re quite a celebrity around here,” my neurologist says, as mum and I meet him in London for the third time since my Superficial Siderosis* diagnosis during March 2017.
Surprisingly, for someone who’s found fame for having a rare disease, I’m relieved. It’s taken five years to get diagnosed, and specialists are finally noticing my nerve pain, ataxiaOverview Ataxia is considered a symptom of your superficial ... (lack of coordination and balance), bladder weakness, crippling constipation, creeping deafness, and, most lately, tinnitusOverview Tinnitus, often experienced as a soft indication of.... The only treatment is the drug I’m taking, but it has mixed results.
MY NEW NORMAL
I still remember waking up one morning in June 2013, feeling like my left knee was in a vice. It was to become my new normal as the sensation gradually spread. Sadly, all the neurosurgeons did was repeat MRI scans on the shunt I’ve had in my spine since the age of 3, then tell me nothing has changed. Everything has changed.
I used to be nicknamed Patsy (Ab Fab), the party girl, but bar hopping, gigs, festivals, and travel are off-limits with my new jelly legs – it’s far from ideal. I’ve done a lot of soul searching, turning to mentors, retreats, group therapy, naturopaths, and even cooking lessons as self-care became a priority.
The friends who’ve stuck by me are precious – I’ve changed loads and can’t go out much, so we’ve all had to adapt. The last time I did try to get to London and back alone for work (a few years ago now), two strangers stopped me, asking, “Are you alright?”, with one blatantly saying I looked drunk! I later fell over in a pub – sober – in front of my colleagues anyway.
HOW I COPE
Despite all this, I’m trying to keep up with normal life. I still work as a communications manager but rely quite heavily on mum and my stepdad for things like shopping, cleaning, and looking after my two cats and a dog. (How many animals does it take to keep a girl with a chronic illness happy? Answer: one in each room!)
MRI scans show that my famous spine has more kinks than an afro. It’s thinning at the bottom and even splits in two at the top. It’s a miracle that it’s got me this far – I guess that’s why I’m a celeb’ at the hospital – so I’m not giving up on healing it. I’m very into the mind-body connection and using visualisation, and meditation to heal. However, I am finding it harder and harder to stay positive – my body feels so broken that it’s not much fun living in it.
Whatever my moodOverview Superficial siderosis progression may have profound..., living with a rare disease is forcing me to make better choices, from food to friends and how I spend my free time. I’ve swapped bar hopping for volunteering, and I’ve never felt more motivated. That’s the one good thing about this illness – the sense of purpose it’s given me. I only stopped beating myself up when my body hit back.
Deborah Hatch
*A rare disease of the brain resulting from chronic iron deposition in neuronal tissues associated with cerebrospinal fluid.
For more on Deb’s story, listen to the Medics 4 Rare Diseases podcast here.
