Chris’s story

In 2011, Chris started to experience a series of symptoms including rapid uncontrollable blinking and couldn’t open her eyes when she was eating or speaking.

Since then and still to this day, Chris struggles to lift her head when walking as it feels heavy and she can’t turn it left or right. She also has difficulties eating, drinking and talking.

She has to always sit directly opposite people to be able to participate in conversations, and finds it harder in a group because the conversation has usually moved on by the time she has got her words out.

At first, Chris was told she had dry eyes and was given eye drops. She saw about four consultants before she was diagnosed with blepharospasm. 

Chris was eventually referred to Moorfields where she had botox injections to reduce her eye spasms. She continues to have these injections every three months. Although, this would often cause discomfort in her eyes.

She underwent two eye surgeries. In 2013, she had a bilateral blepharoplasty on her upper eyelids, a cosmetic procedure to remove excess skin or fat. Then, in 2014, she had a brow suspension surgery, which lifts the upper eyelid by using the forehead muscles. These surgeries improved her vision, and she was able to open her eyes in a moving vehicle.

Unfortunately, these treatments are not a cure.

Chris shared that some days are more difficult than others. She continues to experience stress, anxiety and frustration especially when her head continues to pull downwards when walking.

Although, speaking and eating makes her eyes close, she has found ways to help her cope and temporarily stop the symptoms. This includes dancing, gardening surrounded by green plants, speaking a foreign language and driving as long as no one speaks to her.

Chris describes her eye condition as not life threatening but life changing. 

The treatment she has received so far is not a cure but provides temporary relief. Despite this, she remains positive that a cure will be found in the future.