“I know now that I am strong enough to face whatever Stargardt has in store for me” 

Posted: Wednesday 30 January 2019

Hannah, aged 22, remembers the day she was diagnosed very clearly. 

“I went into my appointment thinking they were just going to give me a glasses prescription,” she said, “but when they told me I have a rare genetic condition called Stargardt disease I was shocked.”

She first started noticing problems when she was in her last year of school. She was struggling to read off the white board and had blurred vision, but she blamed it on her hormones and carried on as normal.

After leaving school she trained to be a dental nurse and went onto pass her driving test, but when she was 18 she started to struggle reading road signs and went for an eye test. 

She said: “I was in shock and just didn’t know what to say. I was told that my vision would deteriorate and I would struggle to see faces, read books etc. the biggest thing was that from that day I was no longer able to drive.

“I felt numb for a few weeks and it didn’t sink in. To be honest four years on and It still hasn’t fully sunk in that I am actually losing my vision.” 

Hannah went home in tears. She immediately sold her car and tried to carry on with normal life. 

“I cried a lot in the early days,” she said. “I came out of my appointment still having lots of questions about Stargardts but I didn’t know who to reach out to so I did a lot of research on the internet. 

“I worried that I would lose my independence, that I wouldn’t be able to work or maintain a good social life. I worried about not being able to see my loved ones’ faces.”

But, four years on Hannah’s outlook is very different. She has adapted her job and is now a dental receptionist, which she is able to manage with her condition at the moment.

And, although she still has worries for the future she is remaining positive.

She says: “I count myself very lucky as I know there’s people in the world much worse off than me. I know now that I am strong enough to face whatever Stargardt has in store for me and that I can adapt with the condition to be able to achieve things.

“It has made me appreciate everything I have. Simple things like buying a kindle has made me able to read books again. I take time to go for walks and admire the beautiful scenery, as I don’t know when or if I’ll be able to see them any longer.”

Hannah is now very open about having the condition, raising awareness to help others and to highlight the need for more research.

“Now, I have learnt that it’s good to talk to people and to not be afraid to tell people about your condition. I really want more people to feel they can speak out and feel less alone. I have been so lucky to have a supportive family that will listen to me tell them about my condition and it really helps to talk.”

We provide free information and support to those with macular disease, along with their family and friends, to help people retain their independence. If you'd like to know more about how we can help call us on 0300 3030 111.