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.
MANAGING PAIN: Huyaam Samuels and Dr Michelle Meiring who helped stabilise her pain and helped her get mobility.
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 UN, palliative care remains “severely neglected” in the country.
This is largely due to a lack of funds, but also a shortage of facilities and trained medical personnel.
Dr Liz Gwyther, chief executive of the Hospice and Palliative Care Association of South Africa, said there were only seven hospitals that offered palliative care in South Africa. However, she commended the national Department of Health for the new national policy framework and strategy for palliative care, which documents steps to be taken to integrate palliative care into the public health sector.
Linda Ganca, lecturer and course convenor of undergraduate palliative care teaching at UCT, said although palliative care hasn’t always been part of the curriculum in medicine it’s introduction in the early 2000s has paid off.
Ganca said traditionally doctors were not trained in palliative care, but this part of medical care was crucial as it helped them better understand the concept of “total pain”, which included not just physical pain but addressed other emotionally distressing factors such as psychological, psychosocial and spiritual.
“Once doctors understand this, they also realise that team work and effective communication are crucial in palliative care,” she said.
“No one individual can effectively provide palliative care, it is a team approach. Doctors play a leading role within the palliative care team as physical pain management is the most distressing symptom and if not adequately managed, the patient, their support system and all caregivers involved may experience poor outcomes.”
To provide quality palliative care, four core team members comprising of a doctor, nurse, social worker and spiritual counsellor must work together with the patient and their families.
“Evidence has proven that most often among palliative care patients psychosocial factors cause more emotional distress than physical factors,” said Ganca.
“It is therefore social workers who are rightfully positioned to address psychosocial concerns of patients and their families when receiving palliative care.”
She raised concerns about the lack of training of social workers in palliative care, saying “no university has directly integrated palliative care into their undergraduate social work curriculum.
“There is therefore urgent need for social work students to be equipped in palliative care to ensure that they are competent to manage palliative care situations.”
Samuels said: “Palliative care changed my life completely. It gave more meaning to my life.
“It helped to shape the person I am today. I was able to complete high school with the support from Paedspal team and my family. It is definitely something which everyone should have access to.”