The story of Ines
After a bone marrow biopsy it was found that on November 13th 2023 I was diagnosed with a fatal case of Secondary Hemophagocytic lymphohistiocytosis, also known as HLH. This disease is extremely rare, with very few cases ever recorded in the UK.
HLH is an autoimmune disease that caused my immune system to “overreact” to a virus, in my case it was EBV virus. Due to my immune system overreacting, it attacked all of my cells and my vital organs as it believed anything inside my body was an invader.
It all began when I was suffering from 41 degrees temperature (which continued for roughly 6 weeks) and jaundice. Following my diagnosis I was in critical care for 4 weeks having to have my life saved. I was left with multiple oxygen masks and adrenaline shots to my heart.
I began chemotherapy and immunotherapy treatments in attempt to remove the virus that was triggering the hlh but unfortunately the virus was found on all my cells and became resistant to the treatments meaning I needed to find a donor for a stem cell transplant.
On January 23rd 2024 after a week of strong chemo to destroy my immune system and white blood cells / neutrophils reaching 0, I received my sisters stem cells. Which saved my life.
I spent just under 4 months in total in hospital and not going outside. Following 3 months just inside my home as recovery from my transplant!
I am now 1 year post transplant and thriving!!