Hi everyone, my name is Janice Strydom.
I suffer from a rare inherited condition called Hereditary Angioedema, a disorder characterized by recurrent episodes of severe swelling which affects any part of the body including the limbs, face, intestinal tract and airway. It is caused by a deficiency of C1 Esterase inhibitor, a protein found in the body. Certain episodes, if left untreated, can be fatal. There are currently no acute medications approved for use in SA and all medications are required to be imported under the Section 21 regulations.
I am very involved in the South African support group for HAE and like many other patient organizations, we are actively working with our doctors and other international patient organizations to increase awareness, diagnosis and treatment of HAE across South Africa. Meeting other patients and having the exposure to international knowledge of HAE has been invaluable in helping us to raise awareness of HAE in our own country.
Having struggled both physically and emotionally for many years with my own disorder, I know that support is crucial for helping patients to start the process of accepting their diagnosis and living their lives as normally as possible.
My involvement in RDSA has helped me to put my own situation into perspective, giving me access to a support system who understand the difficulties faced by rare disease patients on a daily basis. It has also given me a channel to better understand how to navigate the obstacles in terms of fighting for fair and equitable access to adequate care and medications in the South African context.