So I really should try and get back on track with this!
Not sure where I got to as it's been so long since I posted but I'll try to update you on the latest goings on with my RP. Basically, last summer I saw Professor Webster at Moorfields to review my case - he's one of the leading retina consultants in the country so I knew I was in good hands. I spent four hours there having more drops, photos, examinations etc and discussing possible variations of the disease with him and his team. Their knowledge is incredible and the research ongoing is really positive.
As I had my mum and my sister with me (neither has the disease) they asked if we would consider being entered into the new '100,000 Genomes Project' (see HERE for more info), which has been set up by the Department of Health in the UK focusing on rare disease, cancer and infectious disease. We all agreed and had blood work taken for research purposes.
Our saw my local consultant early this year for an update and she's happy for me to continue seeing both her and Prof Webster every six months to monitor how I'm progressing.
It's now that time of year again for my driving licence renewal. It's always a nervy and worrying time for me but it's best to make sure that I'm still safe to be behind the wheel of a car so it's reassuring too. I'm off for my visual field tests next week so I'll try to remember to update to let you know how things have gone! It can take a few weeks to get the results but fingers crossed I'm still ok to carry on - if not, I'll adapt; I don't have much choice!!
So, first update in over a year and it's fairly brief but I'll do my best to update a bit more often from now on!
AFUK x
