On Sunday the 30th June myself and my friend Kyra will be walking a marathon around Sydney to raise money for Cavernoma UK in honour of June being Cavernoma Awareness Month.

The theme for this years awareness month is ‘hope’. This word was chosen in the hope that a cure can be found.

Cavernomas are a cluster of abnormal blood vessels found in the brain and spinal cord.

These can cause serious neurological issues including seizures, haemorrhages, strokes and chronic headaches.

The only form of treatment which exists just now is brain surgery.

My story✨

After being diagnosed with the rare brain condition cerebral cavernous malformation at age 13 I found out I have multiple cavernomas in my brain, I have suffered many different forms of the neurological effects that cavernomas cause so this is something very close to my heart.

In April I suffered a bleed on the brain from a cavernoma in my cerebellum, this triggered a variety of physiological and psychological symptoms. To name just a few I was experiencing multiple amounts of prolonged seizures with excruciating head pains and stroke like symptoms. After spending a period of 3 weeks in hospital, I trialed different treatments and I am still continuing to do so as my body has either seen no or minimal relief to my everyday symptoms caused by my cavernomas. I am still suffering greatly from intense headaches and neurofatigue from my cavernomas which is effecting my day to day life that I want to be living. The hope of having a cure means my body wouldn’t have to go through this again.

A cure is also so important in relation to the health anxiety those with cavermomas face. This is something I am struggling greatly with at the moment as once a cavernous malformation has bled, it is at a significantly greater risk of bleeding again.

Due to the lack of knowledge regarding current treatment one of the main suggestions is just ‘wait and see’. After my most recent scare this is the only answer I have been given which is a confusing and daunting position to be in.

‘So what is a cavernoma?’ This was actually the question asked to a friend by the ambulance staff, doctors and nurses on the evening I was taken into hospital in April, and then to myself multiple times again during my admission. So this is another reason I would like to fundraise, in the hope we can increase the awareness of this brain condition that is needed in both the medical and general world.

Only 3 months after my brain bleed walking 26.2 miles will be challenging for me both physically and mentally. However the courage and strength I have learnt in these past two months, gives me no doubts that I can complete it. Any donation no matter how big or small will make such a difference to current cavernoma research and support!

So we are calling all Sydney friends to please join us and to bring anyone you know on Sunday the 30th June, where we will be walking 26.2 miles. Whether you want to join from the start, half way through or in the last half an hour it would mean incredible amounts. Details on all of this to follow ☺️❤️

#HWFG