Toks Odesanmi is a Cambridge University Hospitals patient who is living with sickle cell disease (SCD), a lifelong and serious health condition that requires ongoing hospital treatment.
People with the condition endure acute episodes of severe pain during a ‘Sickle Cell Crisis’ that can occur multiple times a year.
Toks, who lives in Colchester, has been treated for sickle cell disease at Addenbrooke’s Hospital for a number of years and has needed extensive surgery including a liver transplant, hip replacements, ankle fusion and laser eye treatment.
The 50 year-old keeps her symptoms under control by having regular blood transfusions every eight weeks, to reduce symptoms and prevent any further organ damage.
“Sickle cell disease has defined me, defined my body and made a big dent to my dreams."
Toks
Patients like Toks suffer from episodes of pain, making it difficult for people to continue their jobs or other everyday activities.
In England, there are around 15,000 people living with sickle cell disease – an inherited blood disorder, with 250 new cases a year.
A gene mutation causes red blood cells to become irreversibly sickle shaped, which can lead to serious health issues. When the red blood cells sickle, they do not bend or move easily through the blood vessels causing extreme levels of pain.
The condition is much more prevalent among people of African or African-Caribbean origin. Toks was born in Belfast to Nigerian parents who had come to the UK to study.
“No matter how hard I fight it continues to defeat me, said Toks. “Hope is a luxury that I cannot afford. I live from day to day.”
Toks, who has a 16 year old daughter, works for the Sickle Cell Society (opens in a new tab), supporting and representing people affected.
She describes having Sickle Cell as a 'curse and blessing'.
“Growing up I only saw it as a curse as it limited me a lot. Now that I am in my 50's, I appreciate the good that comes with the bad."
“Little things like my blue badge, the wonderful people I have met along the way, my advocacy work, would not have been possible if I did not have sickle cell.”
Toks
We are building a new specialist hospital that will treat patients for cancer and non-cancer haematological conditions, such as Sickle Cell, TTP and Haemophilia.
For non-cancer haematology patients, clinics will stay on the main Addenbrooke's site, but day case, apheresis and emergency or planned admission will be situated in the new hospital.
