Why we chose a medical career - Personal View
Categories: Medical Career“Your baby is suffering from a genetic skin disorder, her skin is too fragile, she’ll probably not make it over the next few days.” Shock and bewilderment summed up our family’s emotions. Now, 10 years later, although not cured, our niece Myra is doing quite well, and we can reflect on our experiences.
As medical students we are painfully aware of the different priorities of doctors and patients; as second generation members of an immigrant Pakistani family we have struggled to reconcile traditional beliefs with Western medicine.
Myra suffers from recessive dystrophic epidermolysis bullosa (EB), a congenital skin disorder characterised by blistering of skin and mucous membranes on even mild mechanical trauma. When she was born we had not heard of EB.
The first few weeks after discharge from hospital were particularly stressful. Although the nursing staff had encouraged us to handle, feed, and bandage her, being away from the hospital setting gave us great cause for anxiety. What would we do if something happened?
It was no comfort to find that medical staff seemed to share our ignorance. Nobody seemed to know what care entailed apart from careful handling to prevent blisters from forming, or what to do about blisters once they had appeared. We were advised to cover them with dressings and leave them alone, but we found that this made them worse and it was better to lance them with a sewing needle boiled in water. We felt guilty about doing something against medical advice which might cause pain, and were greatly relieved when the EB nurse specialist later informed us that this was exactly the right thing to do. If left, the blister spreads rapidly along the abnormal plane of cleavage in the skin.
Families of children with EB and other rare disorders soon become experts on their children’s condition, and are then in the unfortunate position of having to tell medical staff how to handle their child. There have been times when medical staff have unintentionally caused blisters on Myra’s skin. Such experiences, coupled with the fact that there is no known cure for EB, are hardly conducive to patient confidence. When Myra cannot walk because of blisters on her feet we wish we could get some help from the doctor, but we know there is nothing to do but burst and dress the blisters and wait for them to heal.
Perhaps the most distressing aspect of the disorder involves the problems with feeding. Blisters and raw areas in the mouth and throat mean that eating and drinking are always uncomfortable and sometimes impossible. Children with EB suffer chronic blood loss from the skin and are always anaemic and underweight.
The paediatric district nurse has been the most helpful and approachable member of the medical team. She has become a trusted family friend, providing a link with the hospital and providing considerable psychosocial support.
Coming from a Pakistani Muslim background certainly influenced our perceptions of the aetiology of EB. Myra’s affliction was seen by our elders as either a punishment from God or a result of black magic. It could not be genetic because there had never been any other known cases in the family. It could not be the result of Myra’s parents being first cousins because cousin marriages have occurred for generations and any associated risks would have been known a long time ago. The birth of two unaffected siblings after Myra reinforced these beliefs. For a time it was a case of Them (Western doctors) and Us.
Our cultural and religious background also influenced management. Doctors are highly respected and are expected to come up with all the answers. Among the Pakistani community there is always a readiness to explore other avenues for solace, some more effective than others. Prayer would play a major part in deriving hope and it was certainly the case with us. Resigning oneself to the will of God features predominantly: believing it is a test which requires forbearing may be psychologically therapeutic. Unfortunately in the case of our family it led to a false sense of security and the mistaken belief that it could not happen again. Some families would consult a hakeem in the hope of either a herbal remedy or prayers to promote cure. A relatively common thing is to attach an amulet to various parts of the body, usually around the neck, in the hope that it will promote healing.
At first we believed that Myra’s illness resulted from a supernatural force of evil, and we therefore placed an amulet, obtained from a hakeem. This was removed after a few years and replaced by prayer and hope. Prayer helped to reassure and also served as an outlet for frustration and disbelief. On several occasions family members would return from a trip to Pakistan bearing possible remedies, usually herbal, which we administered along with Myra’s other medicines. None was effective. We had no idea of what they contained, and this was a cause for concern. There was no doubt that the family would try anything that came with strong recommendations from other members of the community.