We are a group of friends and family who are supporting Alice who has been diagnosed with Lupus since 2014. 

Over the past few years we have raised over £15,000 for the Hibbs Lupus Trust.

This year we are doing the Lupus 2 Lupus Challenge - running virtually (and socially distanced) the distance from Lupus Way in Liverpool to Lupus Street in London (and back again!)

Alice's Story

My experience with lupus has been a whirlwind. I had never heard of lupus until 2013. I was a sports coach and a full time special needs teaching assistant. My hobbies included playing sports, socialising with friends and going on activity holidays.

6 months after the best day of my life, my wedding day, our lives turned inside out. I was taken by ambulance with suspect meningitis to hospital. After a lumber punch, xrays and lots of blood tests I was diagnosed with meningitis, sepsis, a blood clot on my lung and double pneumonia. After being under the critical care team and stays in 2 different hospitals over Christmas and New Year, I thought after some rest and tlc everything would go back to normal. How wrong was I!

At the second hospital, they did extensive testing and noticed an abnormality in my blood results. Although I was being referred to a rheumatologist, I thought nothing of it. As the year went on, I started getting aches and pains in my joints and struggled to move when this happened. November 2013, I had my first real flare and that was scary. I woke up at 6.30am and felt fine, went back to sleep for half an hour, then woke up with the alarm, I couldn’t move. I was so frightened. This had never happened before. We contacted the hospital, and with the symptoms and the blood abnormality, they suggested that it could be lupus. However, my bloods at the time were normal.

I was referred to Professor Gordon and City Hospital, Birmingham. Straight away, on the 2^nd January 2014 I was diagnosed with lupus and Sjogren’s syndrome. Phew! I had a diagnosis. I was so happy. I was sent away with steroids, hydroxychloroquine, azathioprine and amitriptyline, plus some leaflets.

Now I did what a lot of people do and I Googled lupus! Now, that was a big mistake. According to doctor Google, I was going to die within 10/15 years!

I now knew that November was a ‘flare’ and it was still attacking my body 2 months later. So along with my daily medications, I had IV steroids. My word, did I crave food. Crisps, cake, chocolate, anything sweet and bad for you. After 3 months I had put on 3 stone due to my inactivity and feeding my cravings. So along with putting on weight, I was also suffering from other side effects from the medications. My face turned into a moon, I couldn’t recognise myself in the mirror (I still can’t, 2 years on), my hair was coming out and I was itching all over. The joys of lupus!

I now have my lupus miracle. Lily Rose was born in October 2019 after lots of care from my rheumatologist and obstetrician. For the 9 months I was pregnant I was lupus free, but that didn't last long after giving birth. I'm now into my sixth year of lupus, I’m still on steroids, although only the injection type every so often! I’m now on my eighth attempt of finding the right immune suppressant and have to take one which is chemotherapy based, so i'm loosing my hair, feeling sick and vomiting. I also still have bad flares where I’m bed ridden. I have to be fed, washed, dressed and toileted because of my lack of movement. During these flares, I take a mixture of pain relief, from tramadol, to gabapentin to oramorph.

When I was first diagnosed I sought out support. I found The Hibbs Lupus Trust and LupusChat on twitter. Both of these have been fantastic support. I’ve gained knowledge, shared experiences and found people who understand. This has been invaluable to me.

I describe lupus as being like the Tazmanian Devil. It comes into your life with no warning, causing mess and destruction that you are left to sort out.

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