What’s it like living with sarcoidosis

What’s It Like To Be is a regular listener.co.nz column where New Zealanders from all walks of life share first-hand experiences of living with and overcoming health challenges. Here, Donna Thomas, 58, tells Paulette Crowley about living with sarcoidosis, a rare inflammatory and autoimmune condition.

I was planting some trees in my garden one day and put some compost down. I didn’t put a mask on while I was doing this, which was really silly. I remember leaning over the compost bag and noticing the tiniest puff of dust going up my nostril. That was in December 2021.

After that, I had some trouble breathing – shortness of breath – and didn’t feel well. I went to the doctor’s a few times, maybe. Then in April, I had some chest pain. My daughter drove me down to the hospital, where I ended up having a CT scan. That’s when they saw a granuloma – kind of a lump of infection – on my lung.

They had to remove the upper right lobe of my lung to biopsy it. That procedure didn’t go smoothly, as my ribs dislocated during the surgery. It’s called a subluxation and the surgeon was kind of blown away because it’s unusual. But when I look back from where I’ve landed now, I must have been in a highly inflamed state.

I was finally diagnosed with sarcoidosis, an autoinflammatory disease, in March 2022 by a respiratory physician. I learnt that well over 90% of sarcoidosis cases start in the lungs, but can go on to affect different parts of the body. About 5% of people will end up with it affecting their neurology – it’s called neurosarcoidosis. That’s what I have ended up with.

Sarcoidosis is definitely one of the rarest rare disorders. The specialist who diagnosed me said most GPs would never see a case in their medical lifetimes. They call it a snowflake disease because everyone who has sarcoidosis presents so differently, meaning that much like snowflakes, no two cases are alike.

This is a really big challenge for medical people, and for me as well. I had a consult with a new neurologist recently. When I asked him if he knew about sarcoidosis, he just didn’t say anything. We look to medical professionals to treat us and if they don’t know what’s going on, it’s really scary.

Some of the ways that sarcoidosis affects me is that my legs, hands and feet ache. This can wake me at night. I also get cramping and burning in my muscles and I’ve got numbness and tingling in my fingers and toes. My cognition is also affected – I find it hard to remember things – and I get very fatigued. Sarcoidosis accelerates many conditions. I’ve had significant surgery around my mouth to get basal cells removed and I have cataracts that are coming on hard and fast. I’ve also just found out I need a hip replacement.

I now live a different life to what I used to. I was a social work trauma specialist, in New Zealand and Australia, assisting highly traumatised people with lengthy histories of abuse, and managed a team of 70 people before I was medically retired. I was working 60 hours a week, like lots of people do. Back then, I could spin a lot of plates, you know, just throw anything at me and I’d just shuffle it around. And it always makes me want to cry because I miss my career, but I can’t do that anymore.