Six members got to speak with an expert who cares for lots of patients with aniridia and has a detailed knowledge of the field
A doctor who specialises in aniridia very generously offerred one-to-one calls with those affected by the condition, during the COVID-19 lockdown.
People with aniridia or their relatives, who are members of Aniridia Network, could request a 20-minute conversation with Dr Moosajee at Moorfields Eye Hospital to talk about the disease.
Dr Mariya Moosajee is a Consultant Ophthalmologist at Moorfields and Great Ormond Street Hospital for Children in London. She is also an Associate Professor leading a research group at UCL Institute of Ophthalmology and the Francis Crick Institute.
She specialises in genetic eye diseases and spends half of her normal working week, seeing patients in clinics with conditions such as aniridia. The rest of the time she researches its causes and is developing potential treatments, to hopefully benefit patients in future.
Over this lockdown, I have continued my clinics at Moorfields but virtually, through video consultations and telephone calls. Being in contact with their specialist has provided my patients with a lot of comfort during this worrying time.
For the past couple of weeks, I felt I needed to do more to help people. Sadly, my intensive care skills are not up to scratch, although I may still be redeployed to the Nightingale Hospital. What I can offer is advice and guidance to patients with rare genetic eye diseases.
So I have reached out to Aniridia Network to offer a weekly “Ask the Expert” session exclusively to its members.
Every Thursday morning Mariya was more than happy to have one-to-one calls, to chat and answer any questions (or point people in the right direction) about the following:
- connecting with specialist services
- accessing genetic testing
- interpreting your genetic testing result
- research and clinical trials that may be applicable
You did not have to be a current patient of Moorfields Eye Hospital or Great Ormond Street Hospital to request a call.
This was not a formal clinical consultation: Mariya didn’t take clinical notes or refer to previous patient notes. The conversation remained completely confidential. It was for a maximum of 20 minutes to allow her to speak to as many people as possible.
I really hope you will find this helpful. It is a terrible time and we must support each other as much as we can. I look forward to speaking with you. Best wishes, stay safe and take care,
Aniridia Network is extremely grateful to Dr Moosajee for so kindly offering her time and expertise in this way to help people affected by aniridia.
Please let us know what you think of this initiative and what else we can do to help during the COVID-19 crisis.