Emy was 60 years old when she noticed her double vision. Her ophthalmologist referred her to an Eye Surgeon in Sydney. The specialist organised a CT scan to be done. An MRI was also organised. They found a benign tumour in her pituitary gland. However, it wasn’t the reason for her double vision. She had a delicate operation to remove the benign tumour at the Alfred Hospital in Melbourne in Oct 2019.

Emy’s diagnostic journey continued. She went to see her neurologist at Liverpool Hospital, NSW, regarding her double vision. She was finally referred to the Genetic Clinic in Liverpool Hospital where they did genetic testing. In May 2018, five years after noticing her double vison, Emy was officially diagnosed with a type of mito called Chronic Progressive External Ophthalmoplegia (CPEO). CPEO is characterised by a loss of muscle function in the eye and eyelid but the whole body may experience a variety of symptoms.

Emy smiling

When she received her mito diagnosis, Emy felt a range of emotions: shocked, numbness, worried, sad, angry and, hopeful. With this new information she realised that she’d been experiencing mito symptoms, such as Restless Legs and Peripheral Neuropathy, since she was 41.

Nowadays, Emy is generally upbeat and positive when it comes to her CPEO. She says she is filled with willpower to fight her condition and believes that staying active is key to her wellbeing. Emy loves to dance and enjoys Pilates and walking. But she worries that her Mito may progress if she’s unable to stay active.

Emy only sees her neurologist once a year and doesn’t have any other regular mito specialists. She doesn’t feel like this is enough to manage and monitor her mito. Emy doesn’t currently take any medication for her mito but has found some pain relief through weekly massages funded by her My Aged Care plan.

Emy and her husband also receive support through My Aged Care for a cleaner and assistance cooking meals. Emy says this a great help as meal prep takes a lot of her energy. Unfortunately, there have been some changes at My Aged Care and Emy must now spend a lot of time following-up for her supports. The added stress of this is affecting her health.

Emy says it can be isolating to battle mito as an adult and it can be particularly challenging when her mito flares up. She and her husband care for each other but they don’t have any other family nearby. Emy worries what will happen to her if her husband passes away before her. She fears the isolation and loneliness of being by herself.

Emy has been active in the mito community and made connections with other members through Facebook. She prefers face-to-face events and has enjoyed attending Mito Foundation’s in-person Mito Meet-ups in the past. She’s now very active online and enjoys volunteering her skills for causes she’s passionate about.

Her advice for other adults with mito is to:

“Keep yourself busy!

For me, brain power is so important because it gives me motivation and the will to get up and be productive. The charity work I do now, gives me a lot of enjoyment, pleasure and happiness! I don’t have time to feel sorry for myself. I don’t think about my mito symptoms. I feel alive! I get up as early as 8am because I am excited about my work.

My brain is active during the day which helps me get a good night’s sleep. I am very happy and contented.”

— Emy

May 2023