This World Glaucoma Week I want to highlight one of the hidden issues that some people may be facing underneath their visible differences.
Of course, the port wine stain is what everyone will notice about me and I will get that comment or double take. I am always more than happy to talk to people about my visible difference but also pleased to explain my condition Sturge Weber and wish more people would ask questions rather than stare or pull their children away.
I have had Sturge Weber all my life and therefore lived with the issues surrounding it. One of these being glaucoma. Although I can’t remember them now, I had two operations on my left eye when I was very young to relieve the pressure. I now have very limited sight in that eye.
I managed through school and college pretty well with good people around me to always help when needed. The first barrier I came against was when I was told both because of my seizures and issues with my eyesight that it would be impossible for me to get a driving licence. It took me a little while to come to terms with this. However, I soon realised I would be just fine and there were plenty of ways to get about without driving!
As I grew older and started college I was happy to educate my class mates on my condition and they were mostly willing to listen. I studied video production and went on to make a documentary on my condition covering both the impact on my sight and my visible difference.
I have been fortunate to only have glaucoma in my left eye. Every nine months I attend the eye clinic to ensure pressure is ok in both eyes and, so far, all has been well. Let’s hope it continues that way.
Want to learn more about glaucoma?
Take a look at these resources:
- Glaucoma in babies and children on the Glaucoma UK website
- Overview of glaucoma on NHS.UK
- About glaucoma on The National Eye Research Centre website
- Sturge Weber syndrome: Information for children and families (April 2012) by Great Ormond Street Hospital for Children NHS Foundation Trust
- Syndromes and anomalies associated with glaucoma on the Glaucoma UK website