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Patient Feature: Jade

Jade shares her cavernoma story for Cavernoma Awareness Month

In Spring 2008 at the age of 17 I started to have a persistent headache, I went to the Dr who told me that, because of my age and being on the pill, it was likely I was just having migraines.

A few weeks passed and, alongside the headaches that were getting more intense, I also started to feel nauseous, vomit, feel dizzy as well as have visual disturbances. I couldn’t even keep water down so I was extremely weak and dehydrated. Despite my parents repeatedly calling the doctor, they were told the same thing over and over.

After nearly a month of these symptoms I was finally admitted to my local A&E where they hydrated me with a drip and did an MRI. This showed a large tumour in my right frontal lobe, I was rushed up to Kings College Hospital and seen by a lovely consultant who specialised in Cavernoma (Mr Walsh). He quickly diagnosed multiple Cavernomas.

I stayed at Kings for almost a month to be monitored but luckily I was safe to return home without intervention.

After a few months and many ophthalmology appointments (as well as some hideous glasses with lines on the front haha) I made a full recovery!

  • In 2011 I had a beautiful baby girl via elective C Section,
  • In 2012 I had a stroke, however I made a full recovery apart from being diagnosed with epilepsy (simple focal seizures).
  • In 2015 I had a beautiful baby boy via elective C section,
  • In 2016 I had a bleed in my thalamus, again I made a full recovery,
  • In 2017 the bleed in my thalamus re-occurred but again I made a full recovery,
  • In 2020 I had a leak in my thalamus and my seizures became more frequent.
  • It’s now 2021 and although I am tired, cutting out sugar and gluten has reduced my seizures massively (I’m not completely seizure free but they’re a lot less).
  • I feel much better in myself and I am very lucky to remain well most of the time.

Having a rare disease can be frustrating and difficult but I believe in following your gut instinct and listening to your body when it tells you to rest, and staying positive always.