Thalassemia In Iran: One Man's Triumph
One of the main reasons why I started blogging was because I felt that people with thalassemia were often seen but not heard.
We're seen by doctors, nurses, lab technicians, specialists and so on, but when are we heard?
The answer for me, for many years, was never.
I didn't speak up about my illness or the chaos going on inside of my mind to anyone
To illustrate the depth of my situation: my own sister didn't even know why I was going to the hospital all the time.
Thalassemia was not something that was talked about in my family -- and that's exactly why I started blogging.
I had a vision of helping people from all over the world overcome the fear, self-loathing, and emotional pain that comes with having thalassemia.
What's miraculous is that people have truly embraced my work and I've gotten to know people in continents I never dreamed I would!
Today's blog post is incredibly inspiring and makes me so happy to share for several reasons:
First, because it's from a man in Iran who has achieved many great things in his life, despite having thalassemia major.
Second, because I hope younger people who feel little hope for themselves will read this and feel they can do anything they desire.
Third, because several people had to translate my questions and MH's responses into Persian/English in order to make this happen. I am so grateful to them (mainly, Sachiko P.!), because I really feel this is an important topic to share.
Fourth, because this story shows us that no matter where we live on this planet, our struggles are all very similar.
Please read through my Q&A with Mohammad Hosein Nikopour and LEAVE A COMMENT at the very bottom. Mohammad and I will be very pleased if you do!
What was it like growing up with Thalassemia in Iran?
MH: I was diagnosed with thalassemia major when I was six months old, so I have spent my entire life with this condition. In all of these years I have come to accept that thalassemia is not a disease, but a perpetual companion, perhaps my most loyal friend.
What do you think of blood donors?
MH: I think that blood donors are an example of the most generous people on earth. No words can ever express their sacrifice and dedication to help save lives.
How do you chelate?
MH: I was among those thalassemia patients who were lucky enough to use Desferal shortly after my diagnosis -- largely thanks to my family's pursuit. When I was younger, I used to resist treatment with Desferal because of the pain that I had to endure. During my adolescence and early adulthood, I realized the significance of this drug in keeping me alive. Today I consider this drug and its infusion pump as my close companion that never leaves my side.
How did your family treat you as you were growing up, compared to the other children with thalassemia in your clinic?
MH: I was fortunate in that until my adolescent years I never felt alone in my trips to the hospital for treatment, because I was always accompanied with either my mother or uncle. They understood my situation very well and took very good care of me. It was useful for us to share our experiences with other thalassemia families.
Through their compassion, my family always sought to create a caring environment for me. Despite having a good understanding of my condition and always being worried about me, my family sought not to transfer their worries to me.
Do you have any brothers and sisters? Do they have thalassemia?
MH: I have two older brothers and one younger sister who also suffers from Thalassemia Major. She is married to another thalassemia patient.
What type of challenges did you face in school?
MH: During those years in which Thalassemia had not yet been well enough introduced to the public, because of their lack of knowledge, sometimes teachers and kids did not act appropriately towards me and at times they even mocked me. I remember that in elementary school, one of my teachers thought that when my parents took me out of school for treatment, they were actually lying to take me to the park or other adventures!
How did you become a photojournalist?
MH: I became interested in photography while I was enrolled in training courses for filmmaking. My passion for photography led me to engage with press circles, and my work was recognized and published in smaller publications. This experience eventually led me to enter professional media, and over time I learned and experienced professional journalism.
How do you manage working and going to the hospital?
MH: Usually I try to schedule my hospital visits and treatments on weekends so that they do not affect my work. But if that is not possible, I get permission from my office.
Could you share pictures of your hospital, your office, or anything else that could show people what your life in Iran is like?
Tell us how you stay positive and move forward to achieve your goals.
MH: Although I, like everyone else, sometimes get overwhelmed with life's difficulties, I try to escape them through my work, which I love and enjoy. I try to distract myself from anxieties and fatigue by reading books and articles on art and fictional stories, or by reading the newspaper.
If you could give advice to someone in India, Afghanistan, Iran or Pakistan about how to achieve the wonderful things you have achieved what would you say?
I recommend that by setting up NGOs with the support of patients who are highly motivated to participate in group efforts, they solve their problems, and together go through the treatment of Thalassemia, as healthy and normal people do.
“To focus on the fact that thalassemia is an incurable disease is not the way towards success for patients and their families.” - MH Nikopour.
Although a person with thalassemia may experience insufficiencies, he or she has capabilities from which others can benefit.
Thalassemia patients should instead thrive on their high intelligence and hard work, while at the same time suffering from this blood condition.
Many thanks to MH for sharing his story with us. I hope that you will comment below to let him know how much you enjoyed learning from him!
To your good health,