In recent weeks, Egypt knocked on the door to eradicate the disease from the cradle, after President Abdel Fattah El-Sisi announced that the state would guarantee treatment, which amounts to about 3 million dollars for each child, to start treating more than one case in recent days, with others being placed under medical evaluation to begin their treatment. .
Karim Al-Sayed told Sky News Arabia about the early periods of the disease, saying: “I tried to find the reason for the weakness of the muscles in my body for several years to no avail. I was exposed to wrong medical diagnoses during my period of visits to clinics and hospitals, until I learned that I had a rare disease that is not known. little about it.”
He continued, “I adapted to the situation until 2010, when I fell while walking in the street and suffered a severe fracture in my foot, which made me unable to move until this time.”
The young man in his thirties continued: “At first I could not believe that I suffer from such a rare disease, but I prayed to God a lot that no one suffers from it after me because of its cruelty and extreme difficulty.”
Out of his suffering, Al-Sayed met with some people who contracted the disease, and decided to launch a campaign to demand highlighting their disease, and demand their rights to obtain treatment for the disease, and to raise awareness of its existence in the first place, so that the platform will be the gateway to deliver their voice in 2016 to the Ministry of Social Solidarity, and to succeed in including Any patient with muscular dystrophy to the file of people with disabilities in Egypt.
During his interview with “Sky News Arabia”, he thanked the Egyptian president for the great role he plays in the muscular dystrophy file, calling on the government to consider his proposal, which includes the establishment of the first hospital specialized in the treatment of genetic and immune diseases in Egypt and the Middle East, to be a lifeline. And hope revives the muscular dystrophy patients in Egypt and African countries.
The Chairman of the Board of Directors of the Muscular Dystrophy Association, Sherifa Mutawa, confirmed that at least two thousand people were diagnosed with muscular dystrophy in Egypt, according to her interview with the “Sky News Arabia” website.
And she continued, “Our goal from the beginning was to raise awareness about the disease that has been absent from the minds of Egyptians for many years, despite the suffering of a large number of it, to be their support, especially after their complaints for long periods of their search for the secret of this monster that has been eating in their body since childhood.”
The head of the Muscular Dystrophy Association confirmed: “We have been trying to communicate with the concerned authorities over the past years, and hold conferences and events that include patients’ talk and demand their rights to obtain treatment, until the government included them for people with disabilities. We always try to follow up on their health and morale, and organize appropriate workshops all the time and presented their demands to government agencies to help solve them in any way possible.
Regarding the therapeutic procedures used to treat the disease, Mutawa referred to the use of devices that assist in walking, a wheelchair and other means of movement, and that some cases require immediate surgery to treat spinal deviation and joint contractures, and the use of an artificial heartbeat regulator, praising Sisi’s decision “as a step Great” that thousands of patients have been waiting for for years.
Spinal muscular atrophy is a genetic disease that gradually destroys motor neurons in the brain stem and spinal cord, which control skeletal muscle activity such as “talking, walking and breathing”, resulting in muscle weakness and atrophy.
From Dakahlia Governorate, Mamdouh Hamed recounted the journey of his suffering with the disease he contracted at the age of 16, when some simple symptoms that some saw as normal at first appeared, such as “walking on the edges of the foot”, but with the passage of time he began to feel a severe drop while climbing a ladder. his home, and from here began the “arduous journey”, as he describes it.
Hamed added to “Sky News Arabia”: “One day I was carrying a small child while going up the stairs, and suddenly I fell to the ground with a severe knee injury, then my father took me to the doctor and I was diagnosed with my suffering in the joints, my need for rest, and treatment.”
Regarding the crucial day for realizing the reality of his illness, he said: “After several years of being affected by the disease, and desperate attempts to be distracted from the symptoms by studying and sleeping most of the time, specifically in 2010, a neurologist offered my father to take me to his clinic in Mansoura, and after conducting the necessary tests, The unknown disease has been identified.
The young man in his thirties hoped that there would be more effective solutions from the Egyptian government to get rid of the crisis once and for all, especially after it started saving children suffering from the disease.
Among the injured people contacted by “Sky News Arabia” was Tamer Haider, who suffered from the disease at the age of 13, along with 5 of his brothers, without any realization of the main cause.
Haidar said: “At the beginning, they said that the crisis was behind lower works (magic), to find ourselves in front of another journey that we fell into without our will, until the symptoms developed and became completely unable to move, so let us begin to visit the doctors.”
He added, “I underwent many medical examinations during my years of illness, all of which did not indicate anything about the disease, until one of the doctors discovered my injury, without knowing its type, being more than 45 types.”
Regarding the hope of treatment, the young man in his thirties sent a letter of thanks to Sisi after his treatment initiative, calling for spreading awareness within all governorates of Egypt, and determining the rates of infection with the disease, so that a tight plan for treatment is developed, as happened with the “C virus” crisis.