Beating the Odds: How Thalassaemia Shaped my Life and Work

Hello, my name is Moch Fadel Nooriandi, and I am a 29-year-old residing in Jakarta, Indonesia, with my mother and sister. I was diagnosed with β-thalassaemia major at the age of 8 months, which requires me to receive blood transfusions every three weeks and take iron chelating agents. I completed a three-year degree in Computer Informatics from a higher education institution in Jakarta and graduated in September 2015. Since January 2016, I have been working as a content creator for the Minister of Tourism and Creative Economy of the Republic of Indonesia.

My friends and I, who are also thalassaemia survivors, have established a community called Thalassemia Movement Indonesia. Officially launched on International Thalassemia Day (May 8th, 2016), our aim is to raise awareness about thalassemia among the Indonesian public.

Thalassemia is preventable through comprehensive screening prior to marriage. As an advocate within the Thalassemia Movement of Indonesia, my vision is to stop the spread of thalassemia across our nation and break its chain in future generations by elevating thalassemia screening to a national programme. As a thalassemia survivor myself, I wish for no one else to endure what I have faced; the disease is isolating and burdensome. The Thalassaemia Movement pushes forward in this fight, determined to ensure that future generations are free from this affliction.

In 2004, my physician, Prof. Dr. Pustika Amalia Wahidiyat, a specialist in Pediatric Thalassemia, diagnosed me with an enlarged spleen (splenomegaly). She initially recommended an urgent splenectomy due to its severity. However, current medical opinion no longer favours this procedure as the best course of action. It is now understood that thalassemia patients without a spleen need to be extraordinarily vigilant with their health due to increased infection risks.

During this challenging period, I grappled with difficult decisions. After thorough discussions with my family and medical team, we opted for the surgery in 2004. I underwent the procedure at Cipto Mangunkusumo Hospital in Jakarta, where I faced a complication of intraoperative bleeding. Fortunately, the skilled surgical team managed the issue effectively.

Following the operation, my health improved significantly. Previously, I needed blood transfusions every one to two weeks; post-surgery, this was extended to every three weeks or monthly. However, it is essential to maintain my health to prevent any decline due to the mild compromise to my immune system from the surgery. Additionally, daily iron chelation therapy is necessary to manage iron levels and avoid complications associated with frequent transfusions.

Throughout this journey, I’ve been determined to stay positive amid life’s challenges. During my school years, I endured significant emotional stress. I was often bullied by peers because of my thin appearance caused by thalassemia and my frequent absences due to hospital visits for blood transfusions. Despite these obstacles, the unwavering support from my teachers and parents helped me disregard the taunts. Their encouragement was instrumental in enabling me to complete my education successfully—through college—and secure employment.

I am deeply thankful and feel fortunate in my current position. Despite being a thalassemia survivor, I am embraced by my employer, Mr. Sandiaga Uno, and my colleagues, who offer unwavering support without discrimination. My regular hospital visits for blood transfusions every three weeks are met with understanding rather than objection. Unfortunately, it’s still commonplace for employers to harbor misconceptions about survivors, who often presume that our medical needs could hinder productivity.

In my everyday life, I lead a typical existence, cherishing moments shared with loved ones, enjoying concerts or cafe outings, and taking part in various other leisure activities.

Despite a busy schedule, I never neglect my commitment to taking iron chelation medication—it’s an essential routine I maintain diligently to prevent iron overload, carrying my medication with me at all times as a reminder of its importance for my well-being.

I am an avid fan of running and football, particularly of Real Madrid. Although direct participation in soccer and running isn’t possible due to medical advice—my physical condition doesn’t allow it and excessive exertion could be detrimental—I indulge my passion by being a devoted spectator during broadcasted games and watching events.

In June 2020, I experienced a life-threatening event when I suffered from heart failure followed by a severe rhythm disorder. The medical team performed both cardiac massage and defibrillation to correct my heart’s rhythm, ultimately saving my life. During this crisis, it was discovered that my blood sugar levels were alarmingly high due to excess iron in my pancreas, which was impairing its insulin production. Consequently, I was diagnosed with diabetes and now require regular insulin injections before meals.

Not many people survive such a critical condition, but I believe it was my zest for life and the support from loved ones that pulled me through. Prior to this incident, I was an avid runner, participating in marathons not for records but for the joy of completion and receiving medals. However, my doctors advised against strenuous activities, and I ceased running marathons. Now, I engage only in light exercise.

All survivors eventually face periods of boredom and a waning enthusiasm for life, highlighting the critical role psychologists play in mental health care within survivor assistance programs. In some instances, this necessitates psychiatric intervention–something I’ve also undergone.

Since early 2022, I have grappled with lapses in focus. Despite persistent efforts to tackle intrusive thoughts, I found myself embroiled in a relentless struggle for mental sovereignty. In my search for respite, I repeatedly turned to Prof. Dr. Pustika Amalia Wahidiyat for guidance.

After being diagnosed initially with depression and later with PTSD following a thorough assessment, I commenced a multifaceted treatment regimen that included psychotherapy, antidepressants, and restorative time spent with friends. Gradually, I’ve noticed signs of recovery. I am fully aware that the road ahead is long and challenging, but my dedication to overcoming these hurdles remains unshakable.

My unwavering conviction is that we, as individuals who have triumphed over thalassemia, are no different from others. It is vital to sustain optimism, persist through adversity, and cultivate gratitude. We must adopt the mindset that we are healthy, capable people entitled to a life replete with successes just like everyone else. Additionally, it’s paramount to adhere to our iron chelation therapy and evaluate our personal limits without imposing undue strain upon ourselves.

To my fellow thalassemia survivors: Let’s act with compassion and take pride in our formidable resilience. While our exterior might convey fragility, our inner strength remains unconquerable. Never relinquish hope—persist in your pursuits and defy the temptation of defeatism. Miracles are real, and hardships do eventually give way. I believe that careful planning will navigate us towards an even brighter future than we’ve envisioned.

Let’s advance with joyful smiles, nurturing positive mentalities, and cherishing every precious moment of this incredible journey!