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Meet the student from Cape Town campaigning for quality healthcare despite her own struggles with serious illness

Author: Kate Jackson, WHPCA
07 April 2018

Huyaam Samuels, 19, has a rare disease and suffers from chronic pain, but that does not stop her from raising her voice to help others.

Huyaam has a rare life-limiting condition called pseduo-achondroplasia and hypermobility syndrome. Among other painful symptoms, this causes her joints to dislocate without warning and leaves her in chronic, intense pain.

Despite her health challenges, Huyaam is a tireless advocate for hospice and palliative care as part of Universal Health Coverage for all who need it.

According to the World Health Organization, palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening/limiting illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Huyaam says: “Palliative care gave me hope when there was none. My palliative care team help me to manage my pain and symptoms and this allows me to go to university.

“They ensure that I am medically fit, psychologically and spiritually supported and able to attend my lectures.

“My specialists and physiotherapists ensure that my chronic pain is well managed and that I am doing my daily exercises accordingly to my weekly workout regimes.”

Today, 7 April, is World Health Day. This year’s theme is: “Universal Health Coverage: everyone, everywhere.” Universal Health Coverage (UHC) means that all people can obtain the health services they need without suffering financial hardship when paying for them.

Palliative care is an essential, defining part of UHC, and Huyaam is adamant that all South Africans should be able to access this essential part of healthcare when they need it.

An ambassador for national NGO, Patch SA, and volunteer at the Worldwide Hospice Palliative Care Alliance, Huyaam is a prolific writer and speaker, bringing her experience as a patient to national and global healthcare debates.

Her words have reached the ears of world leaders, with her statements being read at the World Health Organization, and she has spoken on international radio programmes about her own experience and the importance of palliative care.

Huyaam is a founding member of Palliative Care Voices, a global independent network of people living with life-threatening illnesses. She says: “Through Palliative Care Voices, we aim to address needless suffering by empowering ourselves to raise our own voices to demand quality palliative care for all.”

Huyaam says: “As a palliative care recipient, I know from experience the struggle of the failure to recognise the importance of palliative care myself in my country. It took years for a doctor to believe how much pain I was in daily, how I needed my lifestyle adapted, and most importantly that I needed palliative care.

“Palliative care is an essential, defining part of Universal Health Coverage, and today, on World Health Day, we must make sure that everyone, everywhere is able to access hospice and palliative care if they need it.”

See more articles in Leadership

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