Sticky Blood-Hughes Syndrome Support

My Life Story: Part 1 - aged 19 (Living with Lupus and Hughes Syndrome)

My Life Story:  Part 1 - aged 19 (Living with Lupus and Hughes Syndrome)

Hi - this is a REALLY long one - covers four blogs - but i have been writing it since the Summer of 2000 so it's been dramatically shortened!! Hope by putting it out there that it helps some one...

Tx xx


It all started in September 1999; I had just turned 19 and was having a great time. I was in my second year at university, studying a Masters of pure maths. I was fit and healthy, or so I thought.

I started playing football for the university women's team at the beginning of the term. I wanted to keep fit and I love team sports so I joined the football squad. I played about four times a week for roughly two hours each session.

There were always a few girls who limped off the pitch at the full time whistle and I became one of them after a couple of months. You know how you warm up at the beginning of a match and warm down at the end? Well, our warm downs became so long we'd have to start warming down at half time just so we could go in with the others. Then one Sunday, during indoor practice I went to kick the ball and blacked out; I actually heard myself hitting the floor.

I first went to see my university GP in June 1999 with shingles. Looking back that was the first sign that my immune system was in trouble. In October 1999 I went to see her again because I had a cramp-like pain in my leg just behind the knee, bruises around my knee, I was tired, dizzy and having migraines. I hadn't twigged that they might be all connected I was just annoyed that I wasn't able to be as active as I wanted - that just wasn't me. The doctor prescribed pain killers and advised me to warm up properly. I wasn't convinced it was that and I kept turning up at her door, each time concentrating on this painful leg but all the other problems were still there. To be honest, I just wanted to play football and was annoyed this was stopping me.

One Thursday in December I came in complaining that my leg hurt again, she recommended that I should have a range of tests in the hope of picking something up. Monday the 13th of December was a very unlucky day for me. I had a Black Tie Ball in the evening with my snowboarding club. Just before leaving, I got a phone call from the GP saying that I needed to come in the next morning. My blood test results had come through. She said there was nothing to worry about but I was slightly anaemic and would need further investigation.

The night of the ball was horrible - I had butterflies the size of hawks in my stomach. What on earth is 'further investigations' anyway? Then to top it off, I argued with my friend!

On the Tuesday the doctor sent me to hospital where all my favourite things happened - blood tests, urine samples, throat swabs and loads of questions. The one question they didn't ask me was what my granny died of... at the time I wouldn't have known. I never knew her. She died young.

So, they suggested more tests including an ultra sound on my leg in case it might be deep vein thrombosis (DVT), blood tests for glandular fever, anaemia, liver and renal problems and X-ray for tuberculosis. These are not the things you expect when you are 19 - DVTs, glandular fever and tuberculosis - they are serious. You hear of terrible complications with these - newspapers report on people who have died from things like that and I was young and healthy and. not ready for this. I saw two consultants - they told me the results for everything were negative except kidney function which needed more analysis. They took yet another set of blood tests, more urine samples and told me I looked quite pale - which was nice! They had said that if the results weren't too bad I may be put on steroids and could still go on the family ski holiday on Christmas Eve - just two weeks away. But the results showed chronic renal failure.

My dad, Tony, had taken the day off work to be with me and as he snored in the background, the consultant decided that it would be necessary for me to have a kidney biopsy, to find out 'the extent of the damage'.

Joy of joys, on Friday the 17th December at 8am in the morning I was introduced to my hospital bed for the day. The biopsy was performed with Tony watching. I don't know if it was worse for him or me, but judging by how hard he squeezed the back of my head when they stuck the whacking great needle in my back, it wasn't pleasant for either of us! Thankfully he brought me white chocolates for the anaemia (he's a joker) and ate them while I was nil by mouth! It was the last day of the Christmas term, I was missing the partying, but worse than that, my leg still hurt and no one seemed to care.

Finally, my family took me home - not to my university digs but home home. There I slept for what felt like eight years! Just being woken up for the occasional 'don't take the piss - we need it for testing' gag. I was sore and grumpy but mainly I was feeling frustrated because, after all this, my leg still hurt and I was having serious difficulty just walking.

Tony was a project manager building the Millennium Dome site and three days before Christmas Tony, my brother Stu and I went to watch a dress rehearsal for the big millennium New Year celebrations there. The Dome is a big place; I couldn't walk on my own and had to lean on Tony and Stu. While we were there my mobile rang, it was the results of my tests. I had a terrible sinking feeling. The words "permanent and irreversible damage" stuck in my mind as they told me I might have to go on the kidney transplant list. I felt absolutely gutted; as if someone had just taken away my whole life.

Two days later I was taken to the local doctor, Dr Tomes, again - I could hardly stand by now. She moved heaven and earth to arrange an urgent ultrasound on my leg. No mean feat at midday on Christmas Eve. I knew that if it was a DVT, I would have to cancel the family holiday we were due to go on later that afternoon. To be honest I didn't want to go away now. How could I be surrounded by so much snow but not be able to stand?

Unfortunately a DVT is exactly what it turned out to be, a big one. So I had to learn to inject myself with fragmin into my tummy every day for two weeks, started taking warfarin and had yet more blood tests. Happy Christmas Tascha!!

Cancelling the family holiday at Christmas is hard. I couldn't drink and I remember thinking 'I'm young and I don't want to be ill anymore'. Family and friends were amazing. Have you tried to buy everything you need for Christmas at 3.30 on Christmas Eve?? In the end, we went to my aunt and uncle's for Christmas dinner. My parents were pretty upset - more for me than anything but we all made the best of it by making light of things. It often amazes me how incredible human beings are and how some people just seem to have this terrific strength to come alive under the most horrific situations.

It was when I was talking to my aunt that the conditions Lupus and Hughes Syndrome came up in earnest. My aunt, Lynn Faulds Wood, used to present "Watchdog" on the BBC and is now a patron of the St Thomas' Lupus Trust, along with my uncle John Stapleton. Early in January I was told I had lupus SLE and Hughes Syndrome, which was terrible for my family and for me. I knew nothing about either condition - just that my grandmother had died from Lupus.

Lupus and Hughes are incurable (at the moment) autoimmune disorders where your immune system goes haywire and attacks the body's organs. I have Hughes Antiphospholipid Syndrome and Lupus SLE. In my case the Hughes Syndrome attacked my blood causing it to thicken, while the SLE launched a joint attack on my kidneys, about 75% of my kidneys were scar tissue by the time I was diagnosed (and I was diagnose very quickly). Basically I knew then that I would need to have a kidney transplant within the next 5 or 10 years.

The year had been very difficult - I felt very alone. You don't get much sympathy when you don't look ill. My work at university had suffered although the faculty was brilliant.

I don't remember much about the early days of being diagnosed, but I do remember how quickly I was seen at St Thomas' Lupus clinic. I was seen by Professor Hughes who answered all my questions. It suddenly felt like this was something I could live with, I didn't want to but I could. For the first few weeks, there were blood tests every day. I very quickly learnt about my illnesses and it wasn't long before I knew more about Hughes' and SLE than many of the non-specialist nurses and doctors. But looking after a serious illness is a full-time job. Each time I wanted a blood test I had to go to the doctor for a form so the nurse could do the test, and then back to the doctor for the results. That's because I took responsibility for looking after myself. Although that put me in control, it was time consuming and frustrating.

There are days when I feel terrible, so low and fatigued that I just want to cry. The worst thing is that people don't realise there is anything wrong with me because I look well on the outside, just a bit pale. Sometimes I find my housemates whingeing that they have a sore throat and a stuffy nose, and it's like, HELLO?

So, why did I get lupus SLE and Hughes' Syndrome? Unknown to me, it was in my genes all along and being on the contrceptive pill triggered it off. My GP had no idea what was wrong with me, but listened to her gut feeling that something was wrong and put me down for every test under the sun, thank goodness. Family friends scared me by searching the internet and presuming my life expectancy was months. I want to show that lupus isn't the killer that some people seem to think it is.

What's my life like now? I've defied my ailments and my doctors' expectations (in some cases - the recommendations have changes now from when I was first diagnosed. I was told to take it easy, something I never listened to, and now staying active and enjoying life is the positive message) and got my life back. I'm vice captain of the women's football team at university, captain of the snowboard team. I took part in the Big Air, boarder-cross and slalom competitions in national university competitions held in Austria and I've been teaching horse riding in California for the summer with Camp America. But every time my leg hurts or I get stomach ache, I always worry that it might be connected to the Lupus or the medication.

My final message? I never knew Lupus SLE or Hughes' Syndrome existed. Most people still don't. I'm lucky my GP had a feeling and lucky to get in to St Thomas's Hospital, but we need to start giving people with lupus more than just luck.

2 Replies

Hi Tasch,

Sorry to hear of all the hard times you had to endure. I like you was diagnoised when 30% of my kidneys were damaged, my disease is progressing quickly and i may not even get 5 years. I have high blood pressure too. Anyways thanks for sharing I am not having a good time at the minute but reading your article helped so thanks. x Catherine


Great to hear your life story again, I never tire of reading it - and how positive your life is and that your kidney transplant has worked out well, and of course we all know it is called 'Kevin'. Thanks for writing again, hope you are feeling as well as you sound. Mary F x


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