Why should you donate to Histiocytosis?
I am doing this to raise awareness for HLH ( haemophagocytic lymphohistiocytosis) also known as the Macrophage Activation Syndrome. I suddenly fell ill and was  diagnosed with it in April 2017. After a long road to recovery I am cured and it is all in the past, thanks to the amazing research by Histio UK and the amazing work of the Hospital L’archet in Nice, St Louis hospital in Paris, Chelsea and Westminster and The Hammersmith Hospital.

I am also raising money for Histio UK because a friend from school called Molly, the loveliest girl lost her battle to it aged just 19. It is important to donate so more research can be done in order to prevent this happening to anyone else. 

The autoimmune disease is extremely hard to diagnose because it disguises itself as other less serious diseases and illnesses, therefore often gets misdiagnosed and it’s often too late once the actual diagnosis is made.. For example I was told at first I had a serious bladder infection and sent home from hospital and then when my liver started to fail they thought it was my liver that was the problem.

Unfortunately, for every person fighting for his or her life, the pain and suffering are just as severe for people afflicted with other better known disorders which are receiving lots of  funding. HLH is often fatal, with the death rate still very high.

Most of you before reading this page will not have a clue as to what it is and nor did I before I fell ill with it in April 2017.  Further down the page I will explain my story and what happened.

What is HLH , Macrophage Activation Syndrome?
Every HLH story is completely different. Haemophagocytic lymphohistiocytosis is a critical and complex auto immune disease. They diagnosed me with secondary HLH, also known as the  Macrophage Activation Syndrome. HLH is often referred to as either the “primary” form which is hereditary, or the “secondary” form associated/triggered by infections, viruses, autoimmune diseases, and malignancies (or cancers). 

Your bodies white blood cells which usually combat infection start to overproduce and attack the body and immune system. This overactivity left me with hardly any red and white blood cells and therefore virtually no immune system. It can also cause multiple organ failure and the body can start to shut down.  HLH is too often misdiagnosed due to the many symptoms and viruses associated with it, e.g.in my case liver failure, flu symptoms, high temperatures, and glandular fever. In my case I was extremely lucky due to a doctor by chance reading about it when they were trying to figure out what was wrong, they luckily diagnosed me fast by doing a brown marrow biopsy. I am so thankful for the brilliant health care system in France. 

How it was treated, in my case specifically? 
Far more research is needed to find the best way and most doctors haven't even heard of it and there is not one specific way to treat it. In my case it was secondary HLH (also known as the Macrophage activation syndrome ) and I feel lucky that it wasn’t primary(the genetic version) because what I had was triggered by something else, in my case glandular fever. It was treated by many blood transfusions, strong steroids and a few doses of Etoposide, a chemotherapy  drug, used to try stop the over-activity of the immune system. Luckily this worked and after a very long road to recovery I am now completely cured and free from HLH / The Macrophage Activation syndrome but sadly this is not the case for most people who have been diagnosed with it in the past.

My Story 
In September 2016 I started at Oxford Brookes University, at age 19 I was excited to get stuck into university life. I am very social, love to meet new people and I was looking forward to working hard and embracing the year ahead.

The year was going well for me at first. I made great friends and academically was doing very well. After Christmas however I really struggled with extreme tiredness compared to my flat mates and my friends. This started to affect me physically but also mentally. I knew something wasn't right but my blood tests came back fine, so I thought maybe it was all in my head and I pushed through it, as one does. 

In April 2017 the much needed Easter holiday was approaching, I spent the weekend going out with friends in London and rather than just feeling tired, I felt like I was getting a throat and sinus infection. I flew to France with my family to go to our house on holiday, I thought it would be a relaxing week in our home but this was where the nightmare all began. I felt very fluey and was worried I was going to miss my boyfriends 21st birthday in London. I was meant to fly back to London for his party at the end of the week. Little did I know this was the least of my worries and I would not be flying back any time soon.

First of all, I had very bad flu and infection like symptoms including sinusitis, a throat infection, vomiting, high temperatures, various bladder infections, headaches and I was put on to antibiotics.

After a few various doctor appointments, an ambulance called, a lot of pain and a hospital trip, they misdiagnosed me. They misdiagnosed me a few times to be honest and this is what is so scary about the disease. It’s easy to miss the signals in tests. 

When I first went to hospital in Cannes, they then discharged me and said I’d be fine.  My flu like symptoms worsened after this hospital trip, rather than improving. A few  days later I couldn't walk due to a severe pain in my stomach, I remember screaming with pain and I felt like I was going to die. My mother put me straight in to the car and immediately drove me to a private doctor that was recommended to her by a friend. 

The doctor took one look at me, took my temperature and sent me straight to another hospital close to Valbonne, they did a scan and this is when they realised I only had 20% of my liver left. This was abnormal at my age and very out of the blue, at this point they could also not give me any pain killers or anything as this damages the liver but my temperature was extremely high which is  of course dangerous. I therefore needed cold blood transfusions to try control the temperature. 

The temperature and the pain I went through is hard to comprehend and explain. I still find it hard to process how it was even possible to feel so much pain. It was mental and physical torture and to be honest, I don't think I could ever go through it again. I don’t remember absolutely everything which is probably a good thing but I remember a lot and some of it is a blur because of all the strong medication and your mind often blocks out trauma.

At the first hospital, I was beyond terrified and I was on the top of the list for a liver transplant but then there were signs that  my liver was starting to regenerate. Unfortunately there was a much bigger problem, my white and red blood cell count was extremely low and my temperature was still extremely high, at this point since I first got any symptoms it had been just over a week of having a high temperature. They needed to find out what was wrong very quickly. I was extremely vulnerable because I also had no immune system whatsoever. I remember getting a small cut and because I also had no platelets, I didn’t stop bleeding. I also them remember doing a bone marrow biopsy on my chest and there was so much blood, it wouldn’t stop.

After many extremely terrifying and intrusive tests such as liver biopsies, lumbar punctures and bone marrow biopsies they discovered I had an extremely rare auto immune disease called the Macrophage Activation Syndrome, also known as secondary HLH. 

How did I get it? Secondary HLH was most likely triggered by the combination of having glandular fever and another virus. This explains my tiredness at university (they also refused to test me for it when I suggested perhaps I had glandular fever) because they said I didn’t have a sore throat, to this day I think this is ridiculous because if I had known I had it I would have looked after myself more and not drunk because when you have glandular fever you liver is susceptible to liver damage.

At this point, the fact that I had secondary hlh, induced by ebv and another virus  was not good news for my family to hear, however there was still some hope because they knew what it was at this point and they could try treat it. 

I was in hospital in Nice for around 3 weeks. During those 3 weeks I went to a total of 4 different hospitals, I also spent a few days in an induced coma while they decided what to do and I was on a ventilator. I had a seizure apparently but I don't remember this luckily. I had multi organ failure and they had to keep an eye on this, although the liver was slowly improving. At points my parents were told I may not make it through the night. 

It was horrific for my family to see me so sick and I don’t know how they did it. Throughout this time, the hospital was being instructed by St Louis hospital in Paris because they had never seen or treated anyone with this in Nice.  I then got flown in an air ambulance to Paris because the top Specialist for HLH was in at the St Louis Hospital and there was still no sign of improvement. 

Shortly after arriving in Paris, the chemotherapy, steroids and medication suddenly seemed to be working and we could all start to hope for the best. We were hopefully past the worse. My bloods started to slowly improve. 

I was in hospital in Paris for a total of  2 months, In this time my temperature did not drop below 38.5 degrees. I remember the nurses constantly taking my temperature and 39 to 41 degrees C was the norm. The temperatures were very hard to control and this puts the body under an enormous strain and pressure.

My aim was to just get better and get home to the UK. It was quite scary being in a hospital where I didn’t really speak the language but the french nurses and doctors were amazing beyond words. St Louis eventually agreed when they thought I was much better and they were confident I would make a full recovery but they wanted to make sure  I had someone suitable to take over my care in the UK. The Professor in Paris luckily knew the perfect person who worked at the Chelsea and Westminster, close by. They finally agreed that when I could walk again and my blood count / the fevers were improving,  I could go back home. I lost my hair and my body physically changed. I was so weak In hospital that, I couldn’t walk or move myself to roll over in bed and the hospital only released me on the strict condition that I got stronger. So slowly I started to get my strength back when I got a bit better. By walking one step, the next day two and so on. 

 After arriving back in the UK, I spent a further month in hospital in London due to a few complications. They wanted to keep a close eye on my because they were worried it would happen again. I was finally released and started a slow but positive journey to recovery. It was not an easy 12 weeks in hospital to say the very least, it was painful , traumatic and I had many intrusive procedures. I was extremely scared and sick. It is really hard for me to explain it all because before this happened I didn’t  know that it was even physically possible to endure such agony.

My bloods are now fully back to normal and I am thrilled to say I have made a full recovery. However this experience will always be a huge part of my life and something I’ll never forget. I am told that this most likely will never happen again and I am so grateful for this. I suffered from very bad ptsd and am so much better now but I still suffer sometimes mentally from the trauma.

Please donate to Histio UK, even if it is just the amount you would spend on a coffee because research is vital in saving lives and research needs to carry on I was very lucky and sadly this is not the case for most people diagnosed with hlh. So DONATE NOW to save lives and remember Gift Aid because it's free and important.

I can’t thank my friends and family enough for being so supportive and getting me through the scariest time of my life. I had so many positive people around me. The love and care that was shown by my friends and family will never be forgotten. 

Symptoms to look out for (normally many of them together) Symptoms include persistent high fevers, fatigue, infections (from a bladder infection to kidney infection -generally low immune system) ,headaches, bruising easily and rash, extremely blocked nose and sinuses ,vomiting,  to the most serious problems such as abnormal liver functioning, liver and kidney problems , multi organ failure, spleen bleeding, low red or white cell count and many more.

 I decided to donate a real human hair wig (worth £500) to a charity for women who have lost their hair  to chemotherapy. I lost mine and it was extremely hard. At any age the experience of loosing your hair is truly devastating, especially as a 20 year old girl. When your hair is falling out there is nothing you want more than to get  your hair back so for some people a wig can feel like the closest thing to that.

Donating through Just Giving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.