Early each Monday morning, Nabila prepares the immunodeficiency clinic at the Sultan Qaboos University Hospital in Muscat, Oman. Supporting patients on monthly intravenous immunoglobulin therapy (IVIG), plus those with chronic granulomatous disease, C1 esterase inhibitor deficiencies and complement deficiencies, the clinic ensures patients receive the best care – monitoring IgG trough levels, reviewing prophylactic medication, discussing symptoms and their management, and providing advice to patients and their families. As the only specialist immunology nurse in the country, Nabila forms a critical link between the immunology team and the 90 or so patients in their care.
Registry data from Oman shows that the most common type of primary immunodeficiency in the country is chronic granulomatous disease (42%), followed by predominantly antibody disorders (18%), other well-defined primary immunodeficiencies (13%) and combined immunodeficiencies (12%). As a paediatric nursing intern nearly 10 years ago, Nabila met many patients undergoing monthly IVIG treatment and was struck by the major impact the treatment had on their quality of life, and the stresses it created for their families. Nabila’s interest in improving the care for these patients impressed the immunology team who at that time did not have a specialist nurse, and she soon found herself undertaking the specialist training in allergy and immunology.
Nabila has a well-developed empathy for her patients. Helping young people deal with the burden of lifelong treatment is a particular passion – Nabila is constantly looking for ways to make treatment administration and follow-up less disruptive, for example by training patients for home-administered SCIG, or by linking with local clinics and hospitals for IVIG treatment closer to home. It is a collaborative effort. Nabila says “there is a big load on me, but the team help me a lot. I try to do workshops, trainings and to visit other areas so that other nurses are aware of the issues”.
Screening newborn babies for immunodeficiency, and educating and providing advice to new parents are another part of Nabila’s role. She is often the first contact point for new parents, who are more comfortable talking to Nabila than the immunologists – “they give me the feeling that I am here for them”, she says.
While the situation is obviously better for immunodeficient patients with Nabila on their side, she recognises the need for “strategies to improve the care of primary immunodeficiency disease patients, and to increase the awareness among both parents and physicians”.
