Mazzan al Farsi, a ‘lupus’ warrior’, narrates her story of grit and determination and encourages those in a similar plight to take heart
As a 30 year, young (as I would like to be called) woman today, I look back at the life I have been through from every aspect and realise it’s been a roller coaster with the situations I have faced.
By the age of four approximately, I started having symptoms such as extremely high fever that barley went down, severe loss of weight, abdomen enlargement and extreme hair loss. No solid or liquid would last more then minutes in my system before my body refused it. I was then diagnosed with systemic lupus erythematosus, it is an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs.
I was too young to understand what was happening, but thankfully my mother searched for whatever information she could find about the illness through meeting with doctors or books and pamphlets. Google was not an option back then.
When I was diagnosed, not many children here were detected with it, therefore everything was a first experience to us, since we did not see other children here with it. Trial and error kept going on for a few years until my mother mainly, and family, understood the dos and don’ts to keep this illness stable. I then grew up following these restrictions to be able to live a normal life. Yet, I always stood out in many situations, such as not being able to join the school swimming classes always, nor being able to always join in the outdoor events such as camping and sports day.
The reason was, a lot of sunlight causes the disease to flare up. I constantly got questions such as why I have thin hair or why I had to always wear sunglasses when playing outside. I got questions such as why did I not swim with the rest of the grade and why I skipped out on activates at times. I never knew what to answer because, I did not even know what was wrong with me, so how would I even be able to explain it to others?
By late elementary, the life I was living was the ‘normal life’ but I always knew there was something different in me, just never managed to understand it well. Therefore, since I was on remission during that time, which means that the person with lupus is taking medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement. I realised that I can have an extremely beautiful life as long as I accepted lupus, since it was my ‘other half ‘, it is what makes myself me!
Extreme excitement and a flare up
I led a very joyful, mischievous, adventurous, and fun filled life for years thankfully. Until the year 2014 came along. It was a year of extreme emotional, physical and mental stress. Why you may ask? Because it was a year that was filled with extreme excitement, anxiety, joy, sadness, shock and all the emotions you can think of combined. This caused my stress level to shoot up, leading to a severe lupus flare up.
The flare up led to vasculitis – it is an inflammation of the blood vessels. It happens when the body’s immune system attacks the blood vessel. Vasculitis can affect arteries, veins and capillaries. In my case, it attacked the brain vessels leading to three strokes. The strokes left my body paralysed. I lost my peripheral vision: side vision. The ability to see objects and movement outside of the direct line of vision in my left eye.
I was transported to Germany for treatment by my family. There I was told to expect and accept, if it happens, the inability to drive again or to go back to work one more time. I was then told that continuing my masters degree (which I had begun before getting my stroke) would be unadvisable and dangerous for my case. I remember my extreme anger at the doctor and his team and refused to accept what he said.
Unfortunately, I was rude and yelled back, “You do not tell me what I can and cannot do. I believe, I will, and you’ll see. With my faith in God, my family’s support and determination I will do everything you said I will not”.
Time passed by, we spent almost a year in Germany, between chemo doses to reduce the inflammation of the vasculitis and the rehab center, to walk. It was hard, uneasy and there were many moments where I broke down and gave up. The month before heading home, I contacted my university to continue my degree and they approved. I came home and went back to work, driving alone. All I remember was I had an annual check up after my graduation and I went to my doctor laughing and told him I had something to show him – it was a picture of me holding my degree.
A support group is formed
Time passed, my health got a lot better, but I still go to the hospital for annual checkups and immune system boosters at times. During this year, I got to know many women who have lupus, some whom have just recently been diagnosed and some who have been diagnosed for years. It is then when I realised, I want to be there for them, I want to show them they are not alone, we are one family and a community that understands one another. I want to help them feel and understand that they are not alone and we all support each other. It is then when I decided to initiate a WhatsApp support group where we discuss many things and became like a family in it. Believe it or not, we all came to one conclusion, that we always thought we knew enough about the illness but we learnt more and more through the group. No two lupus patients are exactly in the same plight.
I then realised it is not enough, we need to educate ourselves, families and people around us more. I cannot change the world but I can try to help lupus patients to feel less pain and sadness when comments are thrown their way about their thinning hair, skin rash, and weight fluctuations. That Is when I decided to put myself out there to the world and society through Instagram through the account @zone.goodvibes for two main reasons:
We are all born special in this world in our own way, and my uniqueness came through my other half lupus only after we made peace with each other. This is why I have started a journey to try my level best to help other lupus patients find themselves and make peace in accepting their other half life, like I did. I aim to spread awareness about lupus in Oman like there is much awareness about other illnesses.
I dream that the day will come when lupus patients will be understood and not judged by many, and they will barely hear hurtful comments. Lupus made me who I am and it is the reason I am here to spread good vibes.
What is lupus?
Lupus erythematosus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there’s no cure for lupus, treatments can help control symptoms.
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterised by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
(Source: Mayo Clinic)
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