Dalila’s story: “With lupus, you don’t know when your next flare will be.” 

Dalila, who lives in Cardiff, was diagnosed with systemic lupus erythematosus during childhood. In this blog for #LupusAwarenessMonth she talks about her experiences with the condition and the differences in the care she’s received between England and Wales.  

Diagnosis  

When I was diagnosed, I couldn’t understand that this complex condition doesn’t have a cure and that it wouldn’t be like many of the colds I’d had in the past.  

My parents were taking care of everything and many of my memories during that time are blurred. Eventually, I understood that my lupus meant I had a different life to most of my friends. For example, I needed to take extra care when planning activities in the sun or that could cause me too much stress.  

I also learned that: being regularly in and out of hospital wasn’t unusual, active lupus can result in organ damage, regular doctor’s appointments are part of my routine, and I should always carry my medication with me.  

These lessons were difficult to learn but, in the end, they helped me to improve my quality of life. In 20 years living with lupus, I’ve been lucky to meet wonderful consultants, nurses, and other health care staff that have encouraged me to fight off every flare. They’ve given me strength during my most difficult times, during painful medical procedures and when making tough decisions. 

Kidney damage 

After being diagnosed with lupus whilst living in England, I was diagnosed with lupus nephritis, meaning my lupus has caused damage to my kidneys. 

This was a complete shock to me as I had no visible symptoms. I was scared my nephritis could progress very quickly, but thankfully I was referred to a specialised lupus consultant who managed my condition very professionally, without any delay, and with great accuracy. Together with a coordinated medical team they got my flare under control and stabilised my kidneys.  

Regular monitoring and open communication kept my lupus, and my own stress about my health, well under control. 

With lupus, you don’t know when your next flare will be. Whenever you have a flare, you need to be able to get help quickly and you need to have support from healthcare professionals that not only know about lupus, but your individual condition.   

No lupus patient should live in a stressful and uncertain situation where they don’t receive responsive and specialised medical attention. This is important to help reduce organ damage to the minimum.  

Care in Wales 

Years later I moved to Wales, and I fell in love with the country. Unfortunately, after an intense search, I couldn’t find a lupus specialist team in the area. Nor was I allowed to remain under the care of the team in England, even though when they were willing to continue my care. I was able to keep my lupus under control for some time, but through monitoring inconsistencies and lack of immunosuppression being prescribed my condition continuously flared up until it was decided to restart the treatment that I was prescribed back in England. 

There are big differences between the care I have had in England and in Wales. For instance, my nephritis came back and being referred to see a nephrologist was difficult even though I had kidney damage. We also don’t have a telephone adviceline or lupus nurse to contact about issues which arise at short notice. 

Whilst some consultants have been very kind and tried to help in every possible way, they’ve also been honest and admitted that they don’t know what is best for lupus patients.  

The experience of people like Dalila is why we are calling for change in how people with rare autoimmune rheumatic diseases are cared for in Wales. 

We’re calling for: 

  • A properly commissioned specialised centre for rare autoimmune rheumatic diseases in Wales. 
  • A network, where this specialised centre can support local hospitals to deliver better care. 
  • Urgent action to resolve workforce issues in rheumatology in Wales 

You can read more about our campaign, and the evidence we’ve submitted to the Welsh Government, here