Each one of us has a story to tell and this is what makes us all unique individuals. I am here to share with you my journey with Thalassemia Major and why I became a naturopathic doctor. Thank you in advance for taking the time to read this.
I was first diagnosed with Beta-thalassemia major in 1980, when I was 3 years old. Beta-thalassemia major is the most severe form of the thalassemias and simply, it is an inherited blood disorder where there is a defect in the production in one of the hemoglobin chains thereby reducing, or in this case, eliminating the oxygen-carrying capacity of each red blood cell, thereby, decreasing the function of each red blood cell. Because of its severity, there is destruction of precursors to red blood cells in the bone marrow.
Beta-thalassemia is characterized as a transfusion-dependent anemia, where children seem healthy in the first year or two of life. Eventually, symptoms start to appear, such as paleness, fatigue, fussiness, common colds and reduced appetite or vomiting. This is all because their body is not getting enough oxygen. It is known that 80% of individuals die within the first 4 years of life if not diagnosed, or if severe complications of the anemia develop.
Beta-thalassemia is also called Cooley’s anemia, by the physician who discovered it, and Mediterranean anemia, as it is more prevalent in people of Mediterranean descent (Greeks, Italians, Persians, and Asians). At the time of my diagnosis, there was no known cure for Thalassemia and the prognosis was a life span of 18 years. In that time, the doctors in Thunder Bay Ontario were not that knowledgeable when it came to Thalassemias and didn’t have the facilities to treat Thalassemia major to its full capacity. I was the only patient with Thalassemia in Thunder Bay then. Immediately upon my diagnosis, my entire family got tested. It turned out that everyone on my dad’s side, including my siblings, aunts, and uncles, and my mom, all had Thalassemia minor. With Thalassemias, there is a 25% chance of your offspring inheriting Thalassemia, and since my parents were both Thalassemia minors, I was the “chosen” one to be born with Thalassemia major. Once I was diagnosed, my treatment consisted of regular blood tests and blood transfusions every 3 weeks, and week long trips to Toronto Sick Kids Hospital every three months, where the whole week was filled from 8am-4pm with different tests and seeing different medical doctors.
Subsequently, a few years later, because of all the blood transfusions I was getting every three weeks, iron was becoming overloaded in my body and slowly starting to eat away at my organs, such as my heart, pancreas, pituitary gland, and liver. Therefore, I had to start getting a needle for 12 hours every night in my arm, tummy, or thigh, feeding me medicine through a pump that would help remove the iron build up that was occurring in my body. This was followed by having my spleen removed at Toronto Sick Kids, and being admitted there for several weeks, when I was 6 years old. My spleen had to be removed because it had become so large due to the destruction of all the abnormal red blood cells in my body.
In 1987, when I moved to Vancouver, my iron buildup was so high that the doctor recommended a 48 hour intravenous stay in the hospital every 2 months to give me MORE medication to help remove the iron in my body, since the nightly medicine just wasn’t enough.
It was in 1989 where research on Beta-Thalassemia showed that experimental bone marrow transplants being performed in Italy were somewhat a success if donated by a family member who was a genetic match. My parents were confronted with whether or not we should just continue the standard therapy or increase the risk of complications and long-term outcomes, and possibly death, if undergoing a bone marrow transplant. After several months of pondering, questioning, seeking advice, my parents decided that perhaps it was the best thing for me considering my sister and I were discovered to be an almost identical genetic match.
After the Make-a-Wish-Foundation sent me and my family away to see Disneyland, where they had “Welcome Aliya” plastered on the Anaheim Hotel banner, I was ready to come back and embark on my transplant. In December 1990, at age 13, after 10 days of oral chemotherapy consisting of 20 pills every 6 hours, and 10 days of IV chemotherapy, I was put into a glass isolation room where I became the 3rd person in British Columbia with Thalassemia major, to have had a bone marrow transplant donated by my sister. 28 days later, much to my doctor’s surprise, my sister’s bone marrow started taking over in my body.
You could say that I got “cured” from this condition at that time. But I was far from being “cured”. In the midst of a lot of struggling in high school, I developed Graft-vs-Host disease, this is where my remaining cells in my body were fighting with my sister’s cells in my body and attacking my organ systems, such as my lungs.
During my final year of highschool, I was very immunocompromised as well. I would get a cold every 3 months that would last about 3 weeks. I also ended up in the hospital several times with acute bronchitis. In addition to that, the iron which was expected to come down after the bone marrow transplant still hadn’t come down. All the while taking a tray full of medication 3-4 times a day, I was still trying to live a “normal” teenage life….. yah right!
In university, I still struggled with my illness; however, it was more of an emotional struggle that I was not aware of at that time. I still got sick every 3 months but just got used to the fact that it would always be that way because I didn’t have a spleen. I thought of my illness everyday and always asked the “why me” question.
I didn’t fully become aware of the emotional impact that my transplant and illness had on me until I moved to Toronto when I was 24 years old. One day, I opened my eyes and realized that I hadn’t dealt with the emotional impact of not only my illness, but my ordeal of the bone marrow transplant. After my 100 days of isolation and 100 days of step down isolation after my transplant, I was just thrown back into school and was expected to just pick up where I left off. At that time of my transplant, life drastically changed for me….. and for everyone else. Mentally, who I was before the transplant no longer existed. I realized things would never be the same….. I would never be the same. I realized that the events that occurred after my transplant really compromised my self-perception. I also became conscious of the fact that I had to start taking better care of myself and taking responsibility for my own health. My energy and my life depended on it because I believed and still believe, there is a higher purpose for me being in this world and surviving this ordeal.
After the first year of being in Toronto, I was still getting frequent colds and was quite frustrated with my energy level and overall well being. I was determined to feel better, mentally, physically and emotionally. I hesitantly decided that I would go see a naturopathic doctor since my friend always encouraged me to go. I didn’t know what to expect and I was quite resistant to going. I went with the thought in my head, ‘what can a naturopathic doctor tell me that I don’t already know? I take care of myself, exercise, eat healthy, so what more can they do for me?’ However I went….. and boy did it ever change my life!!! I remember telling my naturopathic clinician at that time the list of my symptoms and repeating to her what I had already heard from so many other doctors I had been to, “I know I know I am complicated”. Her response shifted my attitude towards health and people in general. She said, “Aliya, EVERYONE is complicated”! Wow! 3 words that had so much power not only in changing my attitude but what I believed changed the chemistry of the cells in my body forever. She continued the initial consultation by completing a thorough physical assessment of me….. head to toe! My body hadn’t had attention like THAT in years! Then the clinician told me that naturopaths don’t treat the symptoms, but that they try to support the body and stimulate its own healing ability! What a concept! My clinician told me that there was no “magic bullet” when it comes to healing yourself with naturopathic medicine and that it takes time, it’s more of a lifestyle change and repairing the cells of the body so that the body remembers how to heal itself.
The experience I had that day was so awe-inspiring that when I walked out of that building, I experienced that “Aha” Oprah moment where I envisioned myself being in the role of my clinician. I was exactly where I was supposed to be! I had FINALLY found my purpose in life! When I first walked into that appointment I felt lost and hopeless and indifferent in terms of my health, but then when I walked out of that appointment, I had an overcoming sense of optimism, and confidence because I finally knew how I was going to help change myself, and therefore the world.
Being treated by a naturopathic clinician at the Canadian College of Naturopathic Medicine (CCNM) inspired me and made me aware of the fact that this was my path in life. I felt that not only would I benefit this profession as a patient, but the profession would benefit me as a healer. It was because of my clinician that I chose to make naturopathic medicine not only my life, but my profession. She was the most kind, caring, and empathetic doctor that I had been to since probably my hematologist/oncologist at BC Children’s Hospital.
There were many other “signs” along the path that convinced me that this is my niche. As I became more familiar with naturopathic medicine, my passion for this profession also grew. I learned along the way that if you treat all aspects of a person then this is where true health lies. Although some of us have chronic conditions, our quality of life can be improved by other means. I also believe that treating the patient as a whole is what is most important. Thus, being treated by both types of medicine, mainstream and alternative, a complementary approach, is what is going to most help patients move forward and improve their quality of living.
I have always wanted to make a difference in the world and by being a naturopathic doctor, I believe that I will be able to truly educate others like myself, who have had to live their life with a chronic illness.
Over the years of being a student and a patient, and now a healer, I have addressed many of the mental and emotional issues that I had held inside of me. I’ve had different clinicians and naturopathic doctors over the years, but each one in their own unique way has contributed to my growth and health in positive ways. During school, there were times when I wanted to give up because of my health, because I felt limited in what I could and could not do, mostly in terms of my energy level. But because of the emotional and naturopathic support I received in those years at CCNM, and the continuing healing journey that I am on, I feel that my health just keeps improving exponentially. Every year I am a little more vital, and after my 4 years of school, it was an exciting feeling to have people come up to you and say, “wow, is that really you? You look so healthy”!
Due to my treatment over the past 7 years, I no longer see myself as a victim and have stopped asking myself the “why me” question. I now tell myself “look where you are right now, look what you have overcome and look at how many lives you are touching!”
Where I am today, I feel that I’m at a pinnacle point in my life path to start truly making a difference for those individuals with Thalassemia, and children living with a chronic illness. Even though the physical pain of the needles and chemotherapy is difficult to recall, I do remember the emotional pain of what I endured and I feel that this is what makes me an empathic caregiver. By reaching out and increasing awareness of Thalassemia, I am educating people on genetic pre-screening and improving the quality of lives of those individuals affected by Thalassemia or another chronic illness. If I have impacted one person, I have done my job.
I feel that more awareness about this disorder will start to help people to become more knowledgeable and cognizant of other illnesses than the common ones that most have heard of. I feel that this knowledge would actually improve Thalassemia patients’ quality of life since donations would occur and therefore, we could find a real cure for thalassemia.
My goal is to raise awareness of this particular blood disorder as well as raise money to further enhance treatment options and quality of life for those individuals who are unfortunate, unlike myself, to receive a bone marrow transplant. The money raised can go towards further research of Thalassemia, improvement of the Vancouver Thalassemia Society, money for pumps used by the children to help with their nightly injections, as well as donating to children in Sri Lanka who have limited access to regular blood transfusions. When I found out that patients in Sri Lanka have trouble covering the cost of medical pumps, drugs and travel costs to the nearest clinic it really broke my heart and I realized I am truly blessed and fortunate and NOW I need to give back to the Thalassemia community in whatever way I can. I have the energy, the motivation, the contacts, the power as a naturopathic doctor to actually make a difference for these children, and I am going to!
I truly believe that I was meant to be a naturopathic doctor and to become the guiding force for not only patients with Thalassemia, but for those suffering with a chronic illness. By working with the patient and the medical system, better health for each individual person, physically and mentally, can be achieved. After all, like I have said on numerous occasions and in numerous articles, I am alive today because of western medicine, but I am living today because of naturopathic medicine.
Thank you for taking the time to read this and helping Aliya spread the word about Thalassemia!