Ria's story

This involves weekly INR blood prick tests to ensure that my blood is within the therapeutic range of 2-3. To say the least, it has been a challenging journey with its ups and downs!

In April 2023, I had a sudden seizure while I was at work in an anaesthetic room. After that, I had to spend 10 days in the hospital undergoing various tests such as CT/MRI, blood tests and a lumbar puncture. The doctors initially suspected that there was an abnormality in my brain that caused the seizure, but subsequent scans have ruled out that possibility.

Instead, they discovered a thickening on my skull, which they believe may be related to APS. However, they are still uncertain if the seizure was also caused by APS, as I was only diagnosed with my PEs two weeks later. I am currently seeing both an NHS and a private neurologist to determine whether I should continue taking levetiracetam to prevent further seizures related to APS.

I had never heard of APS before so when I was diagnosed with it, I thought that I was only on blood thinners to prevent any clotting events. However, I started experiencing random symptoms such as frequent headaches, brain fog, extreme fatigue, tingling, and pain down my arms, hands, and feet. Upon researching, I came across APS Support UK, which informed me that these were all symptoms of APS. Although these symptoms weren’t always consistent, I began to think that there might be another underlying issue. As a registered medical professional, I like to know the why and how of everything that has to do with the body. The more I know, the more reassured I feel.

It’s difficult to come to terms with having a condition in your body that is unlikely to be cured. However, I am grateful for the amazing support of my family, friends, and haematologist who have been with me every step of the way. My haematologist and haematology nurses have become like an extended part of my family. They always prioritise what is best for me while also allowing me to make decisions for myself. They answer all my questions during appointments or via phone. They even make my life easier by booking a blood test appointment for me when I’m unable to access it myself. Having such supportive health professionals has made my journey much easier. Without their prompt decisions, I might not have been here to share my story.

This diagnosis has been a shock not only for me, but also for my family. It’s difficult to comprehend that ITP and APS, two opposite blood disorders, are linked together and getting a balance of both is challenging. The diagnosis came after suffering from bilateral pulmonary embolisms. However, I am grateful that I received a quick diagnosis to prevent further catastrophic clotting events. This enables me to prepare for further milestones in life, such as starting a family, with the correct medical knowledge and treatment.

After being diagnosed with both APS and ITP, I created an Instagram account with the username @autoimmunedisorderandri to share my journey with these disorders. I use this platform to document my treatments, side effects, and symptoms and connect with others who are going through the same. It’s still hard for me to comprehend that I have two opposite yet connected blood disorders. I haven’t encountered anyone who has both, but I hope that more people can receive the correct diagnosis and treatment by spreading awareness.

I am grateful for pages and charities such as APS Support UK that provide comprehensive information about APS and share stories of patients who have overcome similar struggles. These resources reassure people that they are not alone and that there are others going through the same thing.

Love, Ria x