Name: Mohammad Faiz Taqiyuddin b Mohd Nor Matric No : BMD 108812 D SGD IPC : Group 1 Facilitator : Dr.

Angus Aranan

THE PATIENTS AND THEIR FAMILY
In this IPC SGD session we were required to reflect on and discuss the film entitled Lorenzo’s Oil and the short film My Name is Lisa , both which depict the struggles of patients and their families as they grapple with chronic and fatal diseases. Two diseases that were depicted in Lorenzo’s oil and My Name is Lisa are Adrenoleukodystrophy (ALD) and Alzheimer ‘s Disease respectively. ALD is a rapidly progressive X-linked genetic disorder that affects only boy marked by the accumulation of saturated very long chain fatty acid ( VLCFA) in all tissues and body fluids, with a preference for the brain and adrenal glands that later leads to inflammation of the brain and erosion of the CNS white matter. In other hand , Alzheimer ‘s disease is the most common cause of dementia that cause by gradual deterioration of brain cells that are vital to memory, decision making and other mental abilities. Lorenzo's Oil is a 1992 American drama film directed by George Miller. It is based on the true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy (ALD). The film was nominated for two Academy Awards. Lorenzo is portrayed as a bright and vibrant young boy living in the Comoros Islands, as his father works for the World Bank and is stationed there. When his parents relocate to the United States he begins to show neurological problems, loss of hearing, tantrums, etc. The boy is diagnosed as having ALD which is fatal within two years. Failing to find a doctor capable of treating their son's rare disease, Augusto and Michaela Odone set out on a mission to find a treatment to save their child. In their quest, the Odones clashed with doctors, scientists, and support groups, who were skeptical that anything could be done about Adrenoleukodystrophy (ALD), much less by laypeople. Due to strong will in finding cure for their beloved son they persisted, setting up camp in medical libraries, reviewing animal experiments, enlisting the aid of Professor Gus Nikolais , badgering researchers, questioning top doctors all over the world, and even organizing an international symposium about the disease. Despite research dead ends, the horror of watching their son's health decline, and being surrounded by skeptics , they persisted until they finally hit upon a therapy involving adding a certain kind of oil, isolated from rapeseed oil and olive oil to their son's diet. They contacted over 100 firms around the world until they found an elderly British chemist ,Don Suddaby, working for Croda International who was willing to take on the challenge of distilling the proper formula. The oil, erucic acid, proved successful in normalizing the accumulation of the very long chain fatty acids in the

brain that had been causing their son's steady decline, thereby halting the progression of the disease. The father is seen taking on the new challenge of organizing biomedical efforts to heal myelin damage in patients that well known as The Myelin Project. Michaela and Augusto, devastated by Lorenzo's diagnosis, decide to research ALD even though neither has a scientific or medical background. The movie shows the Odones often working at odds with skeptical doctors, scientists, and support groups. Michaela and Augusto spend countless hours in medical libraries reading journal articles and talking to researchers and doctors. After much hard work and some inspiration, they help develop a treatment for ALD made from olive and rapeseed, which they name "Lorenzo's Oil." The movie also shows Lorenzo becoming completely bedridden and disabled as his disease progresses. At the end of the movie, he is able to communicate by a modified sign language. The story ends on a positive note as several children with ALD who have been treated with Lorenzo's Oil are shown to be healthy. There is nothing like a parent's love for a child. and because of this Augusto and Michaela Odone chose to make their own miracle. They chose not to give up and struggled to overcome the obstacles. They didn't give up despite the negative circumstances. Instead they went to look for ways on how they can develop a cure and eventually they triumphed over the disease that was slowly taking their son away from them. In the end, they did not only save their son but a lot of other people as well through the oil that they developed. Emotionally the boundaries in the family were relatively normal. They were all very close to one another emotionally, and they care about each other deeply. The cohesion in this family was very high. They all had loyalty to each other and cared about each person in a sense of togetherness and individuality. As Lorenzo became sick this cohesion was tested, but because the cohesion was so high before he got sick, they were able to adapt well as a family unit. My Name is Lisa is based around a girl, Lisa, and her relationship with her mom who is suffering from a Alzheimer’s disease. This short film is not even about the disease itself, but about the people who have a loved one suffering from it. Just like the rest of our bodies, our brains change as we age. Lisa noticed her mother had some slowed thinking and occasional problems remembering certain things. Later it become more serious, such as memory loss, confusion and other major changes in the way her mother minds work are not a normal part of ageing. She assumed that may be a sign that brain cells are failing. As a child it was hard for her to endure as later she will experience a long list of conflicting and competing emotions due to her mother deteriorating illness. When we face an obstacles on the way to an important goal, and we feel that our motivation starting to fade, we will in an automatically manner; with all of the effort that we try to overcome them . Everyone is challenged by obstacles in his or her life – serious problems to deal with. Some people are defeated by the obstacles in their lives, while others find ways to overcome them. Think of someone you have known who has faced and won out over a significant obstacle. You may write about yourself and how you have worked through a problem of your own. Odone’s parent were , of course, devastated by the news but they decided there must be a way. The Odone’s explanation of the setback was not demoralizing. They believed the cure had only not been found yet rather than believe it is incurable. They kept trying and stayed motivated because the way they explained their setback to themselves

set them on fire with determination and commitment. Lisa , although is just a little girl who at the early stage are not notify the changes with her mother depicted how should a family member be patience with their family member who sick and seek their attention. Both this film are just very motivational and we as the prospect medical doctors should take a lesson from it.