How palliative care helped a teenager regain her life

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 flare-ups that result in chronic pain and suxluxation (dislocations) on her major joints.

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