Multiple Sclerosis - what is it exactly?
By: Sarah Tol
Multiple Sclerosis (MS) is a condition in which the isolation- and protective covering around the nerves of the brain, spinal cord and optic nerves (the central nervous system) is damaged. As a result, patients may experience problems with movement, sensation and sight.
In people with MS, the protective covering (myelin) disappears around the nerves resulting in less quick and efficient transmission of nerve impulses. The missing myelin causes nerves to fall ill and eventually disappear. MS patients experiences this as an ever-increasing deterioration, without recovery. Characteristic of MS is the course of the symptoms, coming in periods of exacerbations in the beginning and gradually increasing at a later stage of the disease. The consequences of MS are very diverse and can lead to problems with self-care, mobility, labor and leisure activities. Common symptoms are fatigue, impaired vision, tingling sensations, loss of strength, balance- and bladder disorders. Recovery of MS is not possible. Drugs can be used to shorten the duration of disabling exacerbations, reduce the chance of new exacerbations and alleviate the symptoms of MS. MS occurs in approximately 30 out of 100,000 people worldwide. MS affects twice as many women as men. The average age at of disease onset is 29 years. |
© Javier Ramos
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Jaber's journey to proper treatment
By: Hanan El‘Aouad & Stefanie Enriquez-Geppert
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It all started exactly four years ago, in August 2016, when Jaber was 22 years old. Jaber was in his first semester of studying accountancy at the Larache Specialized Institute of Applied Technology in Morocco, when he suddenly began to experience hand tremors and muscle spasms. His movements became uncontrolled, until even standing upright became a challenging posture. Jaber did not worry too much at first. He thought that this was a possible expression of accumulated stress. After all, what student is not faced with study pressure or is overwhelmed by their workload from time to time? However, in the middle of the school year 2018, Jaber felt totally unable to learn appropriately due to these complaints and subsequently dropped his studies.
Over the course of the next two months, the symptoms and his worries worsened. Other, more severe symptoms began to appear. Jaber had difficulty walking and felt a pain in his knee. He started to sleep poorly and became increasingly plagued by insomnia. His vision became blurry to the extent that the text on his laptop was not legible anymore. Jaber had to close one eye so as to see better with the other when he needed to read. He was confronted with unpleasant states of inner turmoil, rumination and anxiety. This was the moment Jaber and his mother went to the GP, who referred them to a traumatologist. The traumatologist then requested a knee scan, and suggested a knee operation as a solution to Jaber’s problems. Rather than resolving Jaber’s symptoms, other issues started to evolve after the knee operation. Most notably, a hand tremor emerged. Jaber struggled to carry a glass of water or use a spoon when eating. Jaber’s vision deteriorated even more. Again, he and his mother went to the GP. This time they were referred to a neurologist. Following an MRI scan, Multiple Sclerosis (MS) was suspected. Jaber was hospitalized for further analyses. The medical team immediately started a Cortisol treatment so that in the event of acute attacks by MS, the perfusion of cortisol could reduce inflammation and other symptoms. Back home, Jaber received an official medical letter confirming the diagnosis of MS. Jaber then started a monthly Cortisol treatment along with some other treatments (such as Solumedrol 1g) in the hospital. However, Jaber was not covered by health insurance as he was no longer enrolled as a student. He had no access to the public health services he now desperately needed more than he ever had before. Jaber’s family had to privately cover the cost of his cortisol treatments and analysis, which amounted to €500 per month. This was a big challenge for the family who only had access to a basic amount of their orphan’s allowance, which they received as a result of the death of Jaber’s father 11 years previously. After a three-year struggle, Jaber was finally accepted back on to the Moroccan public health insurance in July 2019. This will cover him until July 2023. Despite the fact that he is now finally insured, his MS treatment is yet not covered. At this very moment, Jaber is still waiting to be added in the insurance list to start benefiting from the public insurance scheme. It seems that Jaber still has a long way to go until he can receive the appropriate treatment he so urgently needs. Such treatments are unattainable when they need to be paid for out of one’s own pocket. MS treatments are typically expensive, with an approximate cost of 12,000 EUR (€) per session. Jaber’s treatment plan includes one session every six months, for at least two years. Without full acceptance in the insurance, Jaber cannot afford to start his treatment. Small battles have been fought till now, but meanwhile, Jaber’s well-being has suffered. MS has left him too disabled to live his life normally as other 26 year olds do. He had planned to take a role as a supporting member of his family. That he cannot put this plan into action is what makes him most depressed. This is why now more than ever, Jaber relies on you to make a difference in his life. One small thing you can contribute, is a donation on his gofundme page to support his ongoing treatment. |