UK Disability History Month: Living with Adults Onset Stills Disease

UK Disability History Month takes place between 16 November and 16 December every year and is an opportunity to celebrate the achievements of people living with a disability and to raise awareness of the challenges they face for equality and inclusion in society.

Medical secretary Kate Gower, 42, is in remission from cancer but was then diagnosed with Adults Onset Stills Disease.

She explains how it affects her day to day.

Cancer and Adult Onset Stills Disease

I was diagnosed with acute myeloid leukaemia in 2019 and underwent chemotherapy before having a stem cell transplant in 2020.

I was aiming to return to work in the summer of 2021. However I was struck down with an unknown illness and suffered paralysis, which led to a ten week hospital stay.

While in hospital, I underwent numerous tests and was diagnosed with Adult Onset Stills Disease (AOSD).

It is a type of inflammatory arthritis/autoimmune condition that causes intermittent pain and stiff joints. Fatigue is also common.

The doctors think that the stem cell transplant may have triggered the condition, but there is no definitive way to confirm this. 

Before I was admitted to hospital, I had been diagnosed with tonsillitis, so that could also have been a trigger.

Day to Day

I am always trying to protect my joints so I try to plan my work in advance. For example, I will look at how much typing I need to do and ensure I take regular breaks to try and reduce the pain in my fingers and wrists, which I experience daily. 

I try not to type for longer than 20 minutes without a break. Even if it’s just a break to get a drink, it breaks the repetitiveness of my movement.

This also helps if I am experiencing back pain, as some days I find it difficult to sit in a comfortable position. 

Some days my legs are quite bad so I will try and use the lift instead of the stairs where possible. 

One issue I find with typing is sometimes my fingers will lock into place, so I will have three fingers that I cannot move for half an hour. There is no quick way to get them working again, so I just massage my hand and hope for the best, whilst silently cursing due to the pain. 

I have had my fingers lock after driving on a couple of occasions.

I struggle to stand for long periods of time, so if there is a long queue in a shop I will find myself going somewhere else to get lunch or potentially just putting stuff back on the shelf and ordering online when I get home.

I do tend to do a lot of my shopping online now so if I go out it’s more to window shop. 

If I am out, then I will try and ensure I am somewhere where I can sit down to have a rest. 

Unfortunately I have a double whammy with fatigue as this can last for years after treatment. So with the added fatigue from AOSD, some days I do the bare minimum to get through and other days I will have a burst of energy, which is nice.

I have to self-inject medication twice a day, and remain under monitoring with the Rheumatology department at Addenbrooke’s Hospital in Cambridge.  They have tried to reduce my injections to once a day but I had a flare up so I am back to two a day until at least February 2024, when they will review again. 

Plans for the future

I help care for my grandmother and mum, who both have cancer. I have found that as I am doing more to assist them, my joint issues have worsened slightly, so I have started looking at what is available to assist me. 

I am definitely going to look into the Hidden Disabilities Sunflower lanyard scheme as this may come in handy when I am out on my own. 

I am also going to look into a Reasonable Adjustment Passport to consider what extra support I may need in the workplace, as flare ups of my condition are a potential risk.