Immune Thrombocytopenia. Ring a bell? No? I hadn’t heard of it either until I was diagnosed with it. It was November 2022 and my baby girl was just four months old. I had been receiving monthly blood tests for five years following an MS treatment and this was the last one. I was relieved to have come out the other side with no ill effects. Except, late the following evening, the labs at Kings College Hospital in London called me. They instructed me to go straight to Accident and Emergency.

I was stunned. I felt fine. Tired after having a baby obviously, but otherwise ok. But my blood tests showed my platelets were dangerously low. I had no bruising, no bleeding, no petechiae rashes- there was no outward sign that my platelets were so low.

What is ITP?

ITP is a rare blood disorder. It was previously known as Idiopathic Thrombocytopenia when they didn’t know what caused it. In this condition, platelets are too low which can affect the blood’s ability to clot. It is now thought that the body’s immune system mistakenly attacks and destroys healthy platelets. A normal platelet count is considered to be between 150k and 450k per microlitre of blood.

The most common symptoms of ITP include easy bruising after minimal or even no trauma. Petechiae is a type of rash caused by bleeding under the skin. Bleeding can also occur, such as from the nose or gums. Other symptoms include extreme fatigue and heavy menstrual bleeding.

As for the cause of the ITP – who knows? It may have been one of the two vaccines I had in 30 days preceding the platelet drop. It may have been an MS drug I had taken years before. It could have been something else entirely. I’ve been told that the science isn’t there yet to ascertain an exact cause.

What happened next?

Following that late night phone call, my platelet count was checked every 4 days or so. They numbers were a bit erratic and always well below what is considered normal. I got through Christmas but started to experience one of the most severe headaches I’d ever had. I am used to migraines but this was different. I presented myself at the unit that had been monitoring me and insisted they test me. Sure enough, the platelets had dropped to just 12k and I was put on emergency IVIG and steroids.

It is terrifying to have such a young baby and be diagnosed with an acute case of ITP. I went through a lot of self-pity and guilt. I kept thinking over and over. I would never have brought my daughter into the world if I’d known there was a chance I wouldn’t be here for her. I can say without hesitation that having certain conditions reminds us of our own mortality. More importantly, it shows us how precious life is. We should be grateful for every moment of love and happiness we get. Many people don’t get to see life this way.

If ITP is not caught and treated correctly, it can have fatal consequences. Low platelet counts have led to bleeding on the brain in some patients which is incredibly serious. Anyone with the symptoms of ITP should seek the care of a good haematology team. Managing the condition with the support of a medical team is important.

How has life changed?

Since adding ITP to my list of disabilities, there are certain changes I have had to make. This is along with Multiple Sclerosis, Endometriosis, and hearing loss.

First, removing certain medications entirely. People with ITP are discouraged from using non-steroidal anti-inflammatory (NSAIDs) drugs such as ibuprofen because they make bleeding problems worse. So as I have a codeine allergy that leaves me with paracetamol as the main option for pain management. Aspirin is also problematic as it can make the blood too thin.

Second, staying away from any contact sports or situations likely to cause trauma or bruising. There are certain activities that are now out of the question due to the risks involved. I wasn’t that keen on ice skating or sumo wrestling before. Now, those things are a firm no for me.

Third, stripping back activities for the day. I thought I knew fatigue from the decade of living with MS and endometriosis. But since the ITP diagnosis my ability to function seems to have decreased even further. I am constantly tired. Basic activities seem to need a longer period of rest than ever before. I have even had to apply for a Blue Badge now. Basic errands such as the nursery-run and food shops have become too exhausting lately.

Fourth, changing expectations around birthing my second child. I am expecting baby number two in six weeks time. Naturally, my platelets have been closely monitored throughout the pregnancy. However, the condition removes some of the usual birth choices offered to pregnant mothers. In fact, I won’t be able to have an epidural if the platelet count is too low. A caesarean would also not be an option when I go into labour. It also means that instruments such as ventuose can’t be used on the baby. This is in case they also have a low platelet count. There is no way to know this before birth. It may be that I’d have time for a transfusion before the due date but only time will tell. This baby may want to make an early entry into the world – who knows?

Finding support

This still feels very new to me. I am always on the lookout for any new information on the disease. I also seek out the experiences of others. So far, my main support has been my family. They help me to care for my toddler on bad symptoms days. The haematology team at my hospital also supports me.

Here in the UK, the main charity seems to be the ITP Support Association. I haven’t interacted with them yet. I hope to reach out and join their membership once I’ve safely delivered this baby in the new year. It seems that they offer patient support groups, a telephone helpline and a lot of information on their website. The Platelet Disorder Support Association (PDSA) is also available. It is based in the United States and has a lot of useful information on their website.

So, for now, the ITP seems chronic having lasted more than two years. I live in hope. There will be more research and understanding of the disease in the future. I believe I can still have a healthy-ish and fulfilling life even with the condition.

What about you? Do you have or know someone with ITP? I’d love to hear from fellow patients if so.