Patient experience: living with glaucoma

This week is World Glaucoma Week, held annually to raise awareness of eye disease glaucoma, which is the most common cause of irreversible blindness in the world today. Read our snapshot of the disease and the personal experience of a woman with the condition told in her own words.

Quick facts about glaucoma

Glaucoma is an eye condition which is usually caused by a build up of pressure in the eye. It begins when the fluid in the eye cannot drain properly, resulting in intraocular pressure. This can damage the optic nerve as well as the nerve fibres from the retina.

Damage often develops slowly but any damage cannot be reversed, which is why it is important to have regular eye checks at the optician.

The most common form – chronic open-angle glaucoma – affects up to 2% of people over 40 and around 5% of people over 80. In England and Wales, it is likely that more than 500,000 people have the condition, with many more unaware that they have it. This form is age-related and becoming increasingly common as the population lives longer.

Ways to control and minimise damage include eye drops, laser treatment or surgery.

Research funded by the UK Stem Cell Foundation is ongoing into the potential for patients’ own stem cells to be used to reduce the loss of optic nerve fibres. Professor Geoff Raisman at University College London and Professor Peng Khaw at Moorfields Eye Hospital are collaborating on this experimental project which has shown that transplanting a small number of olfactory ensheathing cells near the optic nerve can halve the loss of fibres caused by raised eye pressure and reduce the damage to the optic nerve tissue.

Patient experience

People often have several health conditions to manage at the same time, complicating treatment and adding to their stress. This situation is demonstrated in the following genuine diary extract, wherein the patient discovered she had the eye condition when being screened for cancer:

My diary

The biopsy taken from my upper back came back as malignant melanoma. Went Tuesday for surgery to have a huge portion removed. The doctor advised me to see my eye doctor and an oral surgeon for cancer screening tests. Oral surgeon removed a huge spot from the roof of my mouth. Waiting on biopsy results. Eye doctor gave me the news that I have glaucoma and some pigment in my eye. Also, a ton of white blood cells circulating in both eyes. I have been given eye drops and a prescription eye drop. Have to follow up with eye doctor tomorrow (Monday), complete physical exam and more blood work with my primary doctor on Tuesday, follow up with oral surgeon on Wednesday. Needless to say, I’m physically and emotionally drained.

Back to work

Today was my first day back to work in almost a week. After the wild ride of news last week and two quick surgeries, I can’t believe I made it a full day. Honestly I feel like I’m about 90 years old today. I am so exhausted and my back is so sore. Had another follow-up appointment with my eye doctor and the pressure in my eyes is still high and I’m fighting some sort of infection so I have to see him again in 10 days. Tomorrow is my complete physical and more blood work with my primary care doctor.

More doctor’s appointments

Well I made it through another long day on very little sleep. Had my physical, bloodwork and internal today. The doctor gave me something to help me sleep. I don’t like to take pills normally but, after two weeks of not sleeping well, I really am looking forward to some solid rest!

My mouth is killing me from the oral surgery last Thursday and, on top of that, I feel like I have a toothache.

Trying to eat better, drop the white foods, increase fruits and greens. Can’t go to the gym for another few months and really happy being back at work, although I get exhausted pretty quickly.

Long wait

It amazes me how doctors can keep you waiting so long for biopsy results. It will be two weeks tomorrow. I NEED to know if my margins are clear or if they will have to go back in and remove more and I’m so aggravated. My eyes are killing me. The drops are not working at all and I’m getting the worst headaches because of it.

This is a real patient’s experience from Treatment Diaries’ website. Read more, share if you like or join in the conversation. Making sure you feel less alone when navigating any diagnosis is important. Treatment Diaries connects people to others who can relate and provide support.

Read another patient experience:

Patient perspective: living with a rare disease