Sipokazi Fokazi

HUYAAM Samuels, 19, was only 13 years old when she started experiencing regular falls, chronic pain and partial dislocations in her joints including her knees, shoulders and ankles.

“My mother knew something was seriously wrong as I kept falling. My knees gave in and I consistently complained of pain. I was 13 when I had my first full knee dislocation. I was doing hurdles and suddenly I couldn’t make it over the last one as my right knee just gave out. All I remember was that I kept screaming due to agonising pain in my knee joint,” she recalled.

After visiting doctors and specialists, who initially saw nothing wrong with her, she was eventually diagnosed with a rare condition called Pseudo-achondroplasia and Hypermobility Syndrome – which is characterised by chronic pain.

People with this condition have laxity within joints and elasticity of the skin as well. While this is normally a genetic condition, in Samuel’s case it’s not genetic and every week she experiences flareups that result in chronic pain and suxluxation (dislocations) on her major joints.

Samuels says the most difficult part of her medical condition was the time it took before she was diagnosed. For six years doctors told her they didn’t know what was wrong with her and therefore could do nothing for her.

“One of the specialists I saw told me: ‘I chop people up and put them back together’. As a 13-year-old, walking out of the room with that in my mind was scary,” she said.

But pain specialist and palliative care consultant Dr Michelle Meiring was willing to listen to Samuels. Meiring, who is also a senior lecturer in Palliative Medicine at UCT and co-founder of Paedspal – an NGO that provides care and support for children living with life threatening and life limiting illnesses in the Western Cape – diagnosed Samuels and helped her get mobility aids to control her dislocations.

Six years after her diagnosis, not only is Samuels grateful to palliative care, which greatly improved the quality of her life, but she is also the youth ambassador of PatchSA (Palliative Treatment and Care for Children) – a South African NGO that provide services to patients and families of paediatric patients with life-limiting conditions.

Palliative care improves the quality of life of patients and their families by relieving suffering by means of pain management and attending to patients’ physical, psychosocial and spiritual needs.

October is recognised as World Hospice and Palliative Care month and October 14 is celebrated every year across the globe to mark palliative care.

Samuels is one of the lucky few to receive palliative care. Although this form of medical care is recognised as a human right by the