The tallest man with the biggest heart

Henriette Lamprecht Dubbed the tallest man in Namibia, 30-year old Alex Gomachab towers above his countrymen in height and spirit.Diagnosed with a rare chronic incurable disease known as Marfan’s Syndrome, his journey crossed many a steep hill.Today Alex, who stands at 2.4 m tall, is a confident, proud, big-hearted man and activist eager to make others aware of his and others with rare diseases’ daily struggle. His biggest desire is to make an impact on the life of someone so much that they achieve their heart’s desires.“I will be the happiest if it is someone like me surviving an illness so rare that only medical staff can define it.”He describes himself as a change agent, hoping that his life can inspire people who not only suffer from rare diseases, but healthy people who are subject to the cruelty and inhumane treatment. Apart from his activism work and trips to the doctor, he enjoys farming and in particular, cattle breeding.“I can’t describe the peace and solace I feel when I am on the farm. I hope to have a Brahman and Simbra stud one day.”Alex was diagnosed in 2000 and though Marfan’s Syndrome is a hereditary genetic disorder, he is the only one in his family who has been tested and diagnosed.Marfan’s Syndrome (MFS) is a genetic disorder of connective tissue. The degree in which people are affected varies. People with Marfan’s tend to be tall and thin, with long arms, legs, fingers and toes. They also typically have flexible joints and scoliosis. The most serious complications involve the heart and aorta with an increased risk of mitral valve prolapse and aortic aneurysm. Other commonly affected areas include the lungs, eyes, bones, and the covering of the spinal cord.Marfan’s is an autosomal dominant disorder. In around 75% of cases, the condition is inherited from a parent while in 25% of cases, it is a new mutation (spontaneous mutation), as is Alex’s case. There is no cure, but many people have a normal life expectancy with proper treatment.Management often includes the use of beta blockers and surgery may be required to repair the aorta or replace a heart valve. It is estimated that about one in 10 000 individuals have Marfan’s syndrome. The most serious signs and symptoms associated with Marfan’s involve the cardiovascular system with fatigue, shortness of breath, heart palpitations, or chest pain radiating to the back, shoulder, or arm. Cold arms, hands and feet can also be linked to the disease because of inadequate circulation.Alex’s life revolves around trying to find the best possible solution to keep an organ functioning, he says. “Even after the diagnosis, I never really thought of the severity of the disease; all the heart sonars and tests, eye operations and other health problems. I just did what had to done and got it over with.”He had a pretty normal childhood and could do everything other children did, the only difference being that the disease had predetermined the way he looked.“People can be cruel and I was - and still am - subjected to bullies, insults, jokes, and pranks. I was often depressed, antisocial, suicidal, anxious and shy.”At his lowest point, he felt lonely in a group of people because they didn’t understand his situation. And then came the realization of just how dangerous the disease after he began reading about the disease.“Every negative emotion I felt before was heightened and I went into a deep and terrifying depression.”It was in this time that Alex started going blind, bordering on total blindness, in the space of six months. For the first time in his life, he began putting a limit to what he could do.“I had to build my dreams around blindness, and I didn’t know how to do it so I stopped dreaming.”He also began developing an ascending aortic aneurysm, out of fear of death, preferring to do nothing and rather just stay in bed. “I refused to do anything. I was safe staying in bed, because it didn’t require me to do anything and that didn’t put my aorta at risk of dilating/bursting and killing me.”But God is good, Alex says, as he is now in the process of getting his eye sight restored, a very lengthy and painful process. He had needles stuck in his eyes while he was fully conscious, his whole ascending aorta and aortic root replaced and got a pacemaker through five operations – half of the more than ten operations he already had to undergo in his lifetime. The operations not only helped in getting his organs functioning again, but also blessed him with much-needed confidence and self-esteem to start rebuilding his life. His medication costs around N$2 500 per month. He admits he sometimes “skips a day because the medication is so expensive and you want it to last longer”. When he started going blind, Alex had no medical aid. “Without a medical aid, it is practically impossible for most people with rare diseases to survive because their existence is very dependent on the required and relevant medication.”The necessary medication isn’t always readily available at clinics or state pharmacies in rural areas where most of these people live, Alex says.“As time goes by, the disease intensifies and the only treatment is surgical, and operations are never a cheap option.”According to Alex, Namibia doesn''t always have a surgeon available to perform a specific operation, with people having to travel overseas to get the required treatment.“Because of the cost involved, most people have no other choice but to live with their ailment and wait for death.” It is also essential for survivors to consult medical practitioners at a regular basis, so that their medication can be regulated and be allocated and advised on the correct dosage.For a variety of reasons, many people who suffer from rare disorders are now physical disabled, Alex explains. With most rare disorders, manifesting the same symptoms as most common diseases, most medical practitioners assume that a specific person is suffering from common disease while there may actually be an obvious clue or two stating otherwise. “I was once treated for tuberculosis while the test they carried out had come back negative. It clearly shows that most people suffering from rare disorders are not on the correct treatment, being advised and in most cases ordered, to drink medication that is not helping and may even be poisoning them.”The first step to change says Alex, is to raise awareness of the existence and the danger of rare diseases through seminars and workshops that not only focus on the general population but also include medical professionals. “Government involvement is important as most people with rare disease are disabled and their only source of medial help is at state hospitals.”Alex feels it is important that the Ministry of Health and Social Services establish a Rare Disease division, focusing on research, census and treatment of people with rare diseases. Access to counsellors and psychologists is essential as it is a “difficult and emotionally draining journey”. If he gets financial assistance, Alex is planning to go to school next year, as he believes he is at the stage where his disease is dangerous but under control.“It will be a great advantage to acquire the relevant expertise in my role as an educator and activist.”• ou4bans@gmail.com; Cell: +264812488355

The tallest man with the biggest heart

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Republikein 2025-04-14

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The tallest man with the biggest heart

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