Why should you donate to Histiocytosis?

I am raising awareness for HLH (haemophagocytic lymphohistiocytosis), also known as Macrophage Activation Syndrome.

In April 2017, I suddenly fell seriously ill and was diagnosed with this rare and life-threatening condition. After a long and difficult road to recovery, I am now fully cured, and it is all behind me - thanks to the incredible research by Histio UK, and the outstanding care I received from Hospital L’Archet in Nice, St Louis Hospital in Paris, Chelsea and Westminster Hospital, and The Hammersmith Hospital.

I am also raising money for Histio UK in memory of a girl I went to school with, Molly B-C - the loveliest person - who sadly lost her battle with HLH at just 19, the same age I was when I became ill. As rare as this disease is said to be, the fact that it affected two people from such a small school, highlights how important it is to raise awareness.

Donations are vital so that more research can be carried out to prevent this from happening to others.

What is HLH?

HLH is an extremely serious and complex autoimmune disease. It is very difficult to diagnose because it mimics other, less serious illnesses and is often misdiagnosed - sometimes until it is too late.

HLH occurs when the body’s white blood cells, which normally fight infection, become overactive and begin attacking the body itself. This can lead to dangerously low blood cell counts, a severely weakened immune system, and even multiple organ failure.

There are two types:

• Primary HLH – a genetic form

• Secondary HLH – triggered by infections, viruses, autoimmune diseases, or cancers.

In my case, I was diagnosed with secondary HLH, triggered by glandular fever EBV and another virus. This triggered the secondary HLH.

Why it’s so dangerous? HLH is often fatal, with a high death rate even today. Many people …like me before I became ill - have never heard of it.

It is frequently misdiagnosed due to its wide range of symptoms, which can include:

• Flu-like symptoms

• High fevers

• Infections

• Liver problems

• Extreme fatigue

In my case, I was initially told I had a serious bladder infection, they misdiagnosed it loads, and later that my liver was the issue, before the correct diagnosis was made.

I was incredibly lucky that a doctor recognised the condition and acted quickly, diagnosing me through a bone marrow biopsy.

** MY STORY **

In September 2016, I started at Oxford Brookes University at 19. I was excited, social, and looking forward to university life. At first, everything was going well, I made great friends and was doing well academically.

After Christmas, I began experiencing extreme fatigue compared to my friends. My blood tests came back normal, so I tried to push through, thinking it might just be in my head. I did ask if it could be glandular fever but she said unlikely and even if it was, you can treat it. Which I think is really bad because I would have rested more if I knew I had it (which I did).

In April 2017, during the Easter holidays, I went to France with my family. I initially thought I had a throat or sinus infection, but things quickly escalated. I developed severe flu-like symptoms, high fevers, and multiple infections.

I had several doctor visits and hospital trips, where they misdiagnosed me and was sent home. A few days later, I was in unbearable pain and could barely walk. My mum rushed me to a doctor, who immediately sent me to hospital. Scans showed that my liver was failing and only had 20% left. I was on the top of the list for a transplant.

From that point on, everything happened very quickly. I experienced extreme pain, dangerously high temperatures, and eventually multiple organ failure. I underwent numerous invasive tests, including bone marrow biopsies, and was at one point placed in an induced coma.

I was transferred between four hospitals in France, including being airlifted to Paris to be treated by a specialist at St Louis Hospital. At times, my family were told I might not survive the night. It was triggered by glandular fever and another virus.

Treatment and recovery

My treatment included:

• Multiple blood transfusions

• High-dose steroids

• Chemotherapy (Etoposide) to help suppress my immune system

For about 6 weeks straight my temperature rarely dropped below 39 degrees. Thankfully, the treatment suddenly worked. After months in hospital and an incredibly slow recovery, my health gradually improved.

I lost my strength completely and had to relearn how to walk. Even turning over in bed was difficult. Step by step, I rebuilt my strength.

After returning to the UK, I spent another month in hospital before finally being discharged. The recovery process was long, both physically and mentally, and I also experienced PTSD.

Today, I am incredibly grateful to say that I have made a full recovery. Other than the physical trauma, of the hardest parts was the mental trauma because it was very traumatic.

Why your donation matters?

Sadly, my outcome is not the norm. Many people diagnosed with HLH do not survive.

Research is critical to:

• Improve diagnosis

• Develop better treatments

• Save lives

Even a small donation - what you might spend on a coffee, can make a real difference.

Final message

Before this happened, I had no idea HLH even existed. Now I know how devastating it can be. Please donate to Histio UK and help raise awareness of this rare but deadly condition.

I was one of the lucky ones. Thank you so much for reading.

I will always be grateful to my friends and family for their love and support during the most difficult time of my life.