My ITP Journey by Emma Roger-Lund – ITP Support Association Scholarship Winner 2024 

My ITP Journey by Emma Roger-Lund – ITP Support Association Scholarship Winner 2024 

My ITP journey started when I was three years old, when my mum noticed blood dripping from my mouth one evening. Upon closer inspection, she saw that small blisters had formed on my gums, and large bruises were dotted all over my legs; we headed straight to A&E. 

Blood tests revealed that my platelet levels were at zero, a result so unusually low that it shocked both the doctors and my parents. After ruling out other illnesses such as leukaemia, I was diagnosed with ITP and given intravenous Immunoglobulin, which managed to raise my platelet levels. However, they would inevitably fall to zero again. After about a week of this cycle, I got a very bad headache.  

The ITP had caused a brain haemorrhage, and my brain continued to swell and bleed at a rapid rate. 

The situation clearly an emergency, I was transferred to Great Ormond Street Hospital, where I received multiple intravenous steroid and platelet transfusions in attempts to increase my platelet count. This was to no avail, and the bleed continued to get bigger and bigger until the pressure on my brain was too great. I was close to dying and started having seizures. An emergency crash team intubated me and took me to the Paediatric Intensive Care Unit. There, emergency surgery was undertaken on my brain to relieve the intense pressure. I was kept in a deep coma after the operation because the pressure remained very high. 

My ITP journey started when I was three years old, when my mum noticed blood dripping from my mouth one evening. Upon closer inspection, she saw that small blisters had formed on my gums, and large bruises were dotted all over my legs; we headed straight to A&E. 

Blood tests revealed that my platelet levels were at zero, a result so unusually low that it shocked both the doctors and my parents. After ruling out other illnesses such as leukaemia, I was diagnosed with ITP and given intravenous Immunoglobulin, which managed to raise my platelet levels. However, they would inevitably fall to zero again. After about a week of this cycle, I got a very bad headache.  

The ITP had caused a brain haemorrhage, and my brain continued to swell and bleed at a rapid rate. The situation clearly an emergency, I was transferred to Great Ormond Street Hospital, where I received multiple intravenous steroid and platelet transfusions in attempts to increase my platelet count. This was to no avail, and the bleed continued to get bigger and bigger until the pressure on my brain was too great. I was close to dying and started having seizures. An emergency crash team intubated me and took me to the Paediatric Intensive Care Unit. There, emergency surgery was undertaken on my brain to relieve the intense pressure. I was kept in a deep coma after the operation because the pressure remained very high. 

Eventually the pressure started reducing and I was brought out of the coma. A scan revealed that many parts of my brain were damaged. I was unable to swallow, move, or talk. This was very difficult, but over a long process of physiotherapy I began to relearn. Although I don’t remember this myself, I have been told about this journey; an exercise to encourage me to reach for a toy required such intense concentration that it took me an hour for my hand to move an inch. Eventually I managed to recover all these lost skills until all that was visible from the brain injury was a scar across my head from one ear to the other. However, I still have long lasting hidden effects from the stroke. School has been very difficult for me, and it takes me a lot longer to process information and I easily develop mental fatigue. I have found it hard to compare my experience to those of others in my year at school, and my two older sisters, as they find it so much easier to spend longer periods studying. However, from experiencing ITP and the difficulties from my brain injury, I have developed strong determination and perseverance skills. Although it was very hard at times, I was able to complete both my GCSEs and A-Levels with grades I had worked so hard to achieve. 

My ITP turned out to be the one that comes back again and again. I had many different treatments over the years, but mainly IV steroids and Azathioprine. After lots of trial and error (including an unfortunate anaphylactic reaction to Rituximab), my mum made the connection that I would get an ITP flare-up about three weeks after recovering from a bacterial infection. Having had a few ear infections or similar over the years, my white blood cells seemingly don’t “switch-off” after they have been fighting bacteria, and so start killing my platelets. After making this discovery, my doctor agreed to try giving me prophylactic antibiotics every day, which prevented me from getting bacterial infections. I have been in remission from ITP ever since. 

Enduring ITP has given me a profound love for books and reading. I would spend many hours in hospital or in bed and reading created an incredible escape for me from the difficult reality of what was going on. I’ve experienced first hand the disadvantages of being in hospital, unable to communicate how I’m feeling. Not only when I actually lost my ability to speak due to my brain injury but also, when shyness and anxiety made me unable to speak up and express my emotions. After I started reading, it opened me up to being able to get an insight into other people’s lives and experiences and through reading all sorts of different books, I have developed the communication skills that have helped me to be able to tell the doctors and nurses what is going on. By studying English at university, I am hoping to develop these skills even further so that I might be able to write about my experiences and help other people who might be struggling in the same or similar way. 

I am hoping to study for a BA in English, starting in 2024. 

ITP Support Association Medical Advisor Professor Nichola Cooper has kindly provided a comment about Emma’s ITP journey.  

Emma’s brave story shows how much ITP can affect children and their families.  It is also a story about hope and resilience. Emma has made an amazing recovery, and has used this to learn lessons on life. Fortunately bleeds in the brain are incredibly rare in children, even if they have long periods with low platelet counts. It is important to contact Drs if you have a lot of bleeding, especially in the mouth or nose, or very heavy periods. It is also interesting to know that Emma has had a response to antibiotics. One of the many frustrating and difficult things about ITP is how unpredictable it can be, and treatment is often by trial and error. Noticing patterns – like Emma’s mum realising that antibiotics improved Emma’s platelet count – is how we can start to understand ITP better. Someone described it as like snowflakes, it may look the same from the outside, but it is very different from the inside. Prof Nichola Cooper, Imperial College