Patient Story

Soma Bilal Saber

This is the first time I’m sharing my story publicly.

I am Soma Bilal Saber, 26 years old medical doctor with a blood disorder known as Beta Thalassaemia major.

When I was first diagnosed with this condition, being alive up to this age was impossible as back then most people with this disorder were dying by their teenage years due to complications of the disease, not only staying alive but reaching this stage of my life with so many accomplishments and a high quality of life was just a miracle to my family and anyone that has ever known me.

I am a Kurdish girl from Kurdistan, Iraq. Which you may all have heard of as the land of peshmergas, the military of Kurdistan regional government . Peshmerga means those who face death, just like our peshmergas, I have been a fighter and a warrior throughout my whole life.

I was born in late 1995 as a normal baby, soon after my parents noticed that I failed to grow, my pink colour gradually turned yellow, I was tired and fatigue all the time and I had received multiple symptomatic treatments and supplements with no benefit.

I was diagnosed with Beta Thalassaemia major when I was 3 and a half years. If you don’t know what that means just like my parents back then, simply; Thalassaemia is an inherited (i.e., passed from parents to children through genes) blood disorder caused when the body doesn’t make enough of a protein called haemoglobin, an important part of red blood cells.

Red blood cells carry oxygen to all the cells of the body. When there are not enough healthy red blood cells, there is also not enough oxygen delivered to all the other cells of the body, which may cause a person to feel tired, weak or short of breath. This is a condition called anaemia.

To cut the long story short I had to receive blood from a healthy donor regularly in order to stay alive. I have been on regular blood transfusions since the age of four, I owe each breath to a drop of blood of a hero who is a blood donor.

My educational journey started at age 7, students are officially enrolled at age 6 in Kurdistan but because I was very tiny and weak, I wasn’t enrolled in primary school until age of 7. I was very excited and had eager to learn. Soon after I began to impress all my teachers and family, I passed all my primary school years being Top one student and receiving honour and appreciation at school level.

During those childhood years my family found out that in people with thalassaemia major, the blood transfusion by itself was not enough, managing the complications was as crucial as the transfusion. One of the most significant complications is iron overload due to frequent blood transfusions which if left untreated would accumulate in vital organs like Heart, Liver, Pancreas and leads to their failure gradually. Lifelong iron chelation therapy is required which was Desferal (Deferoxamine) subcutaneous injection through a slow infusion pump which had to be delivered during a period of 8-10 hours and I had to take those injections every day. My parents had prepared that for me for some period but really compliance was hard for all of us, later their emotional and parental instincts made them feel really sorry for that invasive therapy and decided to only transfuse blood to me without that iron chelating torture.

Few years passed, I finished primary school with 100% average scores, I took STS test for student selection at a private secondary school, and I achieved full scholarship. At age of 13, I studied one year prep class at secondary school to learn languages (English, Turkish and Arabic) by the end of age 13 I was able to communicate in four languages including my Native Kurdish Language. Later I passed every year with honour certificate and Full scholarship.

Despite of those achievements I begun to realize things; my health was declining. I realized that I was looking different from my classmates and friends, I was the shortest of them all, I had full dysmorphic features (Thalassaemia facie) What is described by medical literature as chipmunk face or Mongoloid face (Prominence of malar eminences, frontal bossing, depression of bridge of the nose and exposure of upper central teeth).

I had a huge abdomen due to splenomegaly; the transfused blood was being pooled inside my huge spleen and my transfusion requirements increased to 3 times per month.

Then I had a major surgery to remove my spleen at age 15, I had to take a sick leave from school for more than a month (the only time that my health impacted my studies directly, otherwise I’ve never had any distinction from my classmates neither at school nor later during college life).The surgery was successful, and my health improved.

After that I put a semicolon and told myself ; this is not how my story going to end.

I took my iron chelation regularly, I self-injected myself all the weekdays for up to 10 hours. I injected myself in the evening and it would have just finished by the time I had to go to school early morning. I became my own doctor .

I played, studied, enjoyed every possible moment of my life and I grew up. I had dramatic changes; the evolution was unbelievable after my iron decreased.

I had a growth spurt, my most prominent dysmorphic features reversed, and my endocrine system started working properly by the sixteenth of age.

There has been a lot of ups and downs throughout this journey of course, but I refused to give up, I resisted and changed the reality.

At the age of 19 I finished high school (12th grade) successfully with an average score of 99.83 % and got accepted at college of medicine, which requires highest marks among other colleges at my country.

I studied 6 years to get an MBChB ( Bachelor of Medicine and Bachelor of Surgery) degree at Hawler Medical University, College of Medicine.

Six years of hard work and sleepless nights, every day I was just one step away from giving up, I got back from college drained, exhausted and burnt out as soon as I reached home, I took a quite long nap then woke up stronger than before and never gave up.

I finished all the six years of college successfully; in June 2021 I finally got my MBChB and I was officially a doctor.

I was very excited to start working as a doctor, I couldn’t wait until we ( all the graduates) were going to be employed by the government in January 2022, I started working at a private clinic with a specialist doctor (Internist and cardiologist ), my job included taking medical history, clinical examination, sending for appropriate investigations and preparing the patients to be seen by the Senior doctor and later documentations of the results and treatments that were prescribed by the senior doctor. I got very positive feedbacks.

Later in January 2022, we were all employed by General Directorate of Health _ Erbil .

Since 1st January I have been working in different hospitals across the city in the emergency departments as a junior resident doctor. I have worked at paediatric emergency department, adult emergency department (medical and surgical emergencies), Trauma and Burn emergency department.

I have big dreams for the future that are so big that they sometimes even scare me. I didn’t come this far to only come this far. I hope that I can get an opportunity to do my post graduate medical education and training in United Kingdom.

I cannot put a full stop without appreciating all the people that supported me throughout this journey. First my family, for their love and continuous support, they are the people that always wanted me not to be that hard on myself and kept reminding me that my health and comfort is their top priority.

Second my friends from childhood to this moment, I deeply believe that I am blessed with true friends, they are the ones who loved me when I didn’t love myself.

Third all the doctors and medical staffs that took part in care for my health, especially the ones working at Erbil Thalassaemia Center, for their excellent follow up of our health and also the staff at blood bank for providing high quality blood pints regularly .

Last, all the kind-hearted anonymous blood donors, I owe each minute of my life to a drop of your blood.

My last message is “life is 10 percent what happens to us and 90% how we react to it”.