WOW what can I say?

From The bottom of my platelets a HUGE thank you for all your kind donations, I am thrilled that together we are helping TTP Network make a difference to TTPers like myself and their families by raising awareness of this condition and the importance of donating blood.

THANK YOU 🩸

Thanks for taking the time to visit my JustGiving page.

In October 2024 I became ill with what I first thought were migraines which occurred everyday for a week! I then lost feeling down my right side of my body which lasted a couple of hours. I went to A & E a day later as I had sickness and coughing up blood. I was unexpectedly blue-lighted to the Leicester Royal Infirmary ICU after blood test results showed up as something unusual and what might potentially be a very rare blood disorder called Thrombotic Thrombocytopenic Purpura (TTP).

Whilst waiting to see if the results were positive, there was no time to be wasted, I had to receive the TTP treatment through the night, or there was a possibility I would not see the morning, it really was life threatening. It was treated as a medical emergency and it is estimated that 10-20% of acute patients, of which I was one of them, die from TTP.

Platelets in the blood become sticky and form blood clots in small vessels that can affect any organ. It was discovered after an MRI a few days later that I had indeed suffered a stroke due to the blood clotting in my brain. Platelet levels are normally between 150 and 450 but mine was found to be 4!

I was started on a Plasma Exchange machine, this is where my blood is separated into liquid plasma and blood cells and the plasma is replaced with healthy donated plasma. I had this plasma exchange repeated for several days until the platelet count came back to normal, each exchange taking around 5 hours to complete. The donated plasma is screened and has Adams13 which will replace the enzyme missing in TTP. When I have my Adams13 levels checked the bloods have to be taken to the University College London Hospitals where this is the only place that can check Adams13 as it is so rare and specialised. Adams13 levels needs to be 80% and above and on admission to hospital mine was under 5% so you can see the severity of my diagnosis.

Once the platelet level had reached 50 I could have blood thinners to prevent further strokes and clotting and then I was able to have the treatment called Rituximab which is an antibody therapy. During my acute episode I was given 4 rounds of infusions. Two I had whilst still in hospital and two were given as a day patient once I was able to be strong enough and levels good enough to come home. I also received a blood transfusion to increase my hemoglobin which had dropped below normal level which is a side effect of the plasma exchange.

During the Rituximab I was also given injections for 30 days from starting the treatment. This was called Caplacizumab also known as Capla. These injections cost £5,000 a piece. This stops the little clots that happen in acute TTP from forming by stopping platelets clumping together. Once home from hospital we had to learn how to mix the fluid and powder to administer the injection as unfortunately district nurses are currently not trained in this procedure. We had to return to the hospital weekly to collect the next batch due to their value.

I will continue to be monitored by The Leicester Royal Infirmary who have been amazing throughout this whole rollercoaster of a nightmare but have been a tower of strength in my recovery, knowing that I am kept a close eye on to help avoid any relapse, as the case may be at some point, but hopefully it will not get to such an emergency state next time. If in the future my levels do drop, treatment will be given to stabilise it. The NHS, in my experience, were great, the care the doctors and nurses gave me was awesome and I am truly grateful for everything they have done for me. As TTP is so rare and they don't get to see it often, the student doctors loved something new and spent a lot of time speaking with me and checking in on me, which I hope will go with them in their training and learn more about it to keep awareness of TTP going.

TTP Network have been incredibly helpful providing information for myself and my family but also for my workplace and I want to be able to help raise money for the TTP Network to continue to raise awareness of this very rare blood disorder moving forward and getting the message out there that donating blood is still so important to do. I will be looking forward to joining them for a Family Day Event which brings together TTP patients and their families together to be able to discuss their journeys through TTP and know that they are not alone.

I am lucky to be able to reach out to a great community through my workplace and on February 28th Rare Disease Day we will all be wearing Red for Blood to help raise awareness and funds for the charities.

I would be so grateful if you could help me raise funds or if you are unable to donate, please just talk about me to others to raise awareness of TTP.

Thank you from the bottom of my platelets:)