The curse he made his gift

Henriette Lamprecht - A doctor initially thought he was an albino and suggested his mother rather abort, but today 28-year old Immanuel Brooklyn lives a full, healthy life: From being president of the Namibia Haemophilia Foundation and working as an induction clerk at Nampost Courier Service to running his own independent music Label (B.L.a.C.K Entertainment) as musician, recording artist and producer.Immanuel was diagnosed with haemophilia at birth at the Katutura State Hospital.Haemophilia (pronounced heem-o-FILL-ee-ah) is a rare bleeding disorder in which the blood doesn't clot normally. A person may also bleed internally, especially in one’s knees, ankles and elbows.According to Wikipedia, haemophilia is a mostly inherited genetic disorder that impairs the body's ability to make blood clots, a process needed to stop bleeding. This results in sufferers bleeding longer after an injury, bruising easily, and an increased risk of bleeding inside joints or the brain.Those with a mild case of the disease may have symptoms only after an accident or during surgery. Bleeding into a joint can result in permanent damage while bleeding in the brain can result in long-term headaches, seizures, or a decreased level of consciousness.“The doctor was unsure about what was wrong with me, as my blood showed something out of the norm to him. He initially thought I was an albino and almost had my mother abort the pregnancy. But she opted to keep this handsome piece of art!”The most common symptoms of haemophilia and spontaneous bleeding experienced by most haemophiliacs include:• Unexplained and excessive bleeding from cuts or injuries, or after surgery or dental work.• Many large or deep bruises.• Unusual bleeding after vaccinations.• Pain, swelling or tightness in your joints.• Blood in your urine or stool.• Nosebleeds without a known cause.On the question of how the condition impacts his daily life, Immanuel says, “I’m strong-willed but before I taught myself this mindset, the daily impact of haemophilia on me (and most haemophiliacs) was not only physical, but also mental.”A simple activity like jogging could mean a bleeding episode in a muscle or a joint, while falling or a hard knock against an object could result in internal bleeding or thrombosis.“A simple activity like playing with other children could mean a permanently damaged limb due to bleeding, head injuries and a lot more. Knowing this mentally constrains a boy or a girl with a bleeding disorder from realising their full potential. It can put you in a state of depression; you are scared of life and if you are not, you may end up paying the price. It is a daily battle and not an easy one,” he says.Immanuel had to start taking certain measures in his daily life to accommodate his condition. “I had to put many measures into action, especially after being injured, after almost dying due to a head injury and after being in and out of hospital and basically not having a normal childhood.”This includes that he had to refrain from playing with other kids, no sports, and no activities that could be a strain on his joints or that may cause bleeding in his muscles. “I had to infuse regularly – something I didn’t do as you tend to be rebellious towards your own mortality. Basically I first had to make peace with not being normal.”Immanuel infuses himself with Factor 8, a replacement therapy. “The main treatment for haemophilia is called replacement therapy. It refers to concentrates of clotting factor VIII (for haemophilia A) or clotting factor IX (for haemophilia B) that are slowly dripped or injected into a vein. These infusions help replace the clotting factor that’s missing or low.”He can’t single out a specific thing that he struggles with the most.“Everything is bad. You are sensitive and prone to injuries that can cause permanent damage. You can die at any moment because of an artery or a vein that could burst in your head. It is a struggle that dominates the thoughts of any and every haemophiliac and person with a bleeding disorder to still get up in the morning, all while you’re trying to get through life and reach its pinnacles.”He admits he struggles with the thought of his own mortality, the fact that at any given time a vein can burst in his head which could be the end of him. While this is a struggle, it is also his driving force, making him push life’s limits, compelling him strive to bigger heights and believing in himself. “It’s a curse that I’ve made my gift!”Immanuel explains haemophilia is a lifelong condition that can only be managed, not treated. “After being diagnosed, you will know whether your case is moderate, mild or severe. Based on your diagnosis, regular factor concentrate infusions and check-ups for inhibitors, a safe gym regimen for muscle gain and bone density, as well as a healthy diet, the condition can be managed. Regular visits to the doctor and also gaining knowledge about your condition are essential, since this can save your life in cases where doctors are not familiar with the condition.”The Namibia Haemophilia Foundation was established to support haemophiliacs locally. It is a patient organisation that was initially started by a group of medical practitioners as a support group for patients with haemophilia and other bleeding disorders. The aim was to help other doctors who are not familiar with the condition to help save patients’ lives. “A call was made for a national patient organisation and the reaction was the creation of a group of patients and parents of patients with haemophilia and other bleeding disorders.” The foundation was established in 2015, registered in 2016 and accredited by the World Federation of Haemophilia globally as the Namibian Haemophilia Foundation in the same year. According to Immanuel, a support group for patients with Primary Immunodeficiency Diseases (P.I.D) is also in the pipeline. P.I.Ds are a group of more than 300 rare, chronic disorders in which part of the body's immune system is missing or functions improperly. “How this relates to our group, is that it falls under the umbrella of rare disorders, meaning it too has not been made aware of amongst health practitioners, patients and the general public.Local pharmaceutical company Cospharm is actively involved in the Namibian Haemophilia Foundation through sponsorships and assistance in emergencies. (Namhf01@gmail.com; www.haemophilia.org.za/foundation)

The curse he made his gift

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The curse he made his gift

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