Last month was awareness month for autoimmune disorders, in particular a disorder I was diagnosed with when I was 14 known as idiopathic or immune thrombocytopenia purpura (ITP)..try saying that after a few drinks. ITP is a very rare bleeding disorder in which the immune system destroys the platelets in the body. These platelets clot blood to prevent internal & external bleeds. ITP causes bruising, bleeding, extreme fatigue and in worse cases intercranial hemorrhage. The condition is treated with time, steroids, platelet transfusions, splenectomy & chemotherapy.
I struggle to put into words how difficult life became during and after this disease.I suffered an acute episode which came on quickly I was on day 12 of my cycle, my spots would not stop bleeding and I’d woke up covered in a odouress rash which I found out was actually petechiae which are capillaries of blood which leak out under the skin. There was no known cause for this. After a visit to the doctors for blood tests we received a call a few ours later urging an admission to hospital as soon as possible. Then the hard bit started.
The Doctor wrote my diagnosis down on a newspaper at my bed side. For just over 3 months I couldn’t bathe myself I couldn’t sleep in my own bed I had to have padding around me at night to keep me safe, someone watching and caring for me 24/7 to ensure I didn’t knock myself and cause further internal bleeding. This disrupted my education as I couldn’t go to school I couldn’t see my friends I couldn’t leave the house except for routine bloods at the hospital every few days. Prognosis was completely unknown acute episodes can go on for months to a year but the Doctor couldn’t guarantee that the disease would ever cure itself as my platelets were continuously being destroyed by my immune system. A normal range is between 150,000-450,000. Mine had fallen to 0 which put me at high risk of internal bleeding meaning I could die.
Fortunately after 3 months of steroid therapy and a good iron diet my platelets started to increase weekly to a stable range, the doctor had said I could start going out. The first time I went out was to B&Q with my parents and I just remember people stared at me, admittedly I was frightening to look at my whole body head to toe in bruises including the whites of my eyes. I often remember just thinking ‘will I ever look like me’ ‘will I be able to wear make up’ ‘will I get better’ ‘this just isn’t fair’. I stayed in remission from then up to the age of 22 when I got a related blood condition known as Henoch-Schonlein in which my body was able to fight off itself. I later found out there is genetic link and the cause may infact be hereditary.
It’s only until the last few weeks I’ve been able to talk about it as it has caused a lot of trauma and upset in my life. I’ve never spoken openly about the condition and how it’s physically and mentally made me feel when I talk about it, it physically hurts but now I’ve spent time researching to gain an understanding of the condition and talked through the experiences I am quite shocked to see how many people are struggling to overcome it.
It has made me want to try and raise some awareness and help in some way. Unfortunately I can not donate blood due to ITP but I’d love to reach out to others who may have had or be going through this to see how it all started for them and to maybe look to raising money for blood disorder charities. I don’t feel like there is the awareness out there it’s super rare and it’s something I would like to get involved with to help other people.
Thank you for taking the time out to read this ✌🏼♥️