Alison’s story: Living with retinitis pigmentosa
17 January 2025

Diagnosed with incurable retinitis pigmentosa at 23, Alison Whelan reflects on 35 years of resilience, acceptance, and support from Moorfields Eye Hospital.
The diagnosis
Initially, Alison found it difficult to accept that she was diagnosed with retinitis pigmentosa.
What is retinitis pigmentosa (RP)
Learn more
Retinitis pigmentosa (RP) is the name for a group of conditions called ‘retinal dystrophies’ which affect the area at the back of your eye (the retina), causing the tissue to waste away.
Eventually, these conditions can stop the retina from working completely, causing permanent changes to your eye that reduce vision. The speed, severity and age of onset of vision loss all depend on the type of RP that you have, but early signs usually appear in childhood.
Symptoms may include:
- poor ability to see in dim light, often called‘night blindness’;
- problems seeing things in your peripheral vision (the outer limits of your vision);
- difficulty adjusting to different light conditions, for example moving between a light and a dark room.
RP is a hereditary condition, which means you inherit it from a family member. Genetic testing can be carried out to see if you have a faulty gene that causes RP.
There is currently no cure for RP and no treatment that can stop the condition from getting worse. Researchers are looking into a number of potential treatment areas, such as gene therapy, stem cell therapy and nutritional therapy.
The news left her devastated, as she was told her condition was incurable, progressive and could lead to blindness.
I thought I was going to be blind within the year, even though everyone was telling me that I probably would never go completely blind and I would live a very healthy life all the way up to eighty or ninety years old.
Alison

Searching for answers
After Alison’s diagnosis, she tried out different ways to cope and manage.
She attended Fighting Blindness meetings, but as a young adult, she found it challenging to connect, feeling out of place among the older attendees.
I didn’t accept my diagnosis with any grace at all. I fought against it and I didn’t go back to Moorfields for about five years.
Alison
Determined to find her own solution she ignored Moorfields advice and sought out her own treatments hoping to find a way to slow the progression of her eye condition.
Returning to Moorfields Eye Hospital
At around thirty years old Alison noticed her vision was getting worse so she returned to Moorfields Eye Hospital.

She was prescribed with acetazolamide to reduce the pressure behind her eyes.
When Alison started to take the medication from Moorfields the pressure in her eyes got better.
I needed those five years to rail against the diagnosis. Just to know that actually, if I come back and I tuck in to Moorfields and I kind of, you know, I just run this marathon that is retinitis pigmentosa with them, I’ve kind of got all the wisdom and all the expertise in the world in one place.
Alison
Over the years, Alison has undergone various treatments at Moorfields, including cataract removal, laser surgery, Eylea injections, medical blepharoplasty and a double vitrectomy.
Living with RP is a constantly evolving experience, and Alison feels fortunate to have a dedicated team by her side.

Alison after left eye vitrectomy in March 2015

Alison post medical bletharoplasty in August 2024
My partner with this condition has been Moorfields.
Alison
A message to her younger self
If Alison could go back in time she would reassure her younger self that it’s going to be okay, take care of her body and keep going to Moorfields.
Alison prioritises her health, maintaining a proactive lifestyle that includes a balanced diet, regular exercise, and staying connected with the RP community.

Alison today
Now in her fifties, Alison continues to visit a local Moorfields branch.
She is grateful for the expert guidance that has supported her through decades of living with RP.
I am so blessed that I have these experts in my life because I don’t know where I’d be in this very blurry world without Moorfields.
Alison
Alison shared this video of her story with us – watch below: