14/05/2026
For World Haemophilia Day, we spoke to Sister “Annie” Anne-Louise Cruickshank, the Haemophilia Nurse Co-ordinator for the South African Haemophilia Foundation based at Groote Schuur Hospital in Cape Town.
Sister Annie works closely with people living with haemophilia and related bleeding disorders. Her role includes patient education, family support, outreach, and helping patients understand how to manage their condition.
“Groote Schuur Hospital’s haematology clinic sees patients with different blood disorders. These include haemophilia, von Willebrand disease, rare factor deficiencies, sickle cell disease, and blood cancers such as leukaemia, myeloma and lymphoma. The clinic also supports the bone marrow transplant programme. The clinic services both male and female patients for bleeding disorders.
My focus is on haemophilia and the genetic bleeding disorders programme, which forms part of this wider service.
For the past four years, my position has been supported by the South African Haemophilia Foundation. On alternating days I work between Groote Schuur Hospital, Red Cross War Memorial Children’s Hospital and Tygerberg Hospital. I also support outreach work across the province.
The South African Haemophilia Foundation also supports other nurses across South Africa. Our nurses cover the whole country from Limpopo to Northern Cape. We travel a great deal to reach patients and clinics.
Haemophilia is a genetic bleeding disorder that mainly affects males. It means that the blood does not clot properly, which can lead to longer bleeding after an injury, operation or dental procedure. Some people may also bleed into their joints or muscles.
For about 70% of patients, haemophilia is inherited. In these cases, we draw up family trees and follow up with family members who may be carriers.
We also counsel men who have haemophilia and ask whether they have daughters, because their daughters will be carriers. These women may pass the condition on to their sons.
This is why it is very important for us to know when a mother who is a carrier is pregnant. If the baby is a boy, we make sure that he is delivered at a tertiary hospital and tested for haemophilia at birth.
In about 30% of patients, there is no known family history of haemophilia. This means the condition can appear in a family for the first time.
I think it takes a big adjustment for patients and families when someone is diagnosed with haemophilia. But we always say that if the condition is well managed, it should only play a small part in a person’s life.
Haemophilia is a good example of a genetic condition that can be treated and managed very well. Today, there is no reason why a child born with haemophilia should not go to school, get an education, study further, work, and live a full life like anyone else. That is what we want for every patient.
However, access to care can still be difficult for many families in South Africa. In some communities, poverty and limited resources make it hard for patients to get to hospital for care and lifelong follow-up. Transport costs, distance, and access to treatment can all become barriers.
Ultimately, we want our patients to manage their condition well so that they do not need to spend too much time in hospital.
Through the SAHF, we educate patients about their condition. We also support people with bleeding disorders across the country with medical alert bracelets. These bracelets can save lives. They alert healthcare workers that the patient has a bleeding disorder and may need clotting factor treatment first.
There has been real progress in haemophilia care, and patients can now live much more normal lives. When I worked at the Johannesburg Haemophilia Centre (now Charlotte Maxeke Hemophilia Treatment Centre) in 1991, the ward was often full of young boys and patients who were bleeding because they were not yet on prophylaxis.
From the early 2000s, we slowly started putting patients on prophylaxis – regular treatment given to help prevent bleeding before it happens. This was a major step forward. It meant patients were better managed, had fewer bleeds, and did not need to spend as much time in hospital.
I really enjoy what I do. That is why I am still working, even though I should be retired. I am humbled by the patients I work with. I have known some families for many years, and they are incredible people. I do not know where they get their strength from. If it were not for them, I would not have had the job, the career, and the opportunities I have had. I am truly grateful."