A Victorious Battle with Lupus
Published: 02:03 PM,Mar 12,2022 | EDITED : 06:03 PM,Mar 12,2022
They say 'When the going gets tough, the tough get going' but little did Mazzan al Farsi, a young, ambitious and enterprising lady know that she needed to get tougher to sail through the difficult times to fulfill the dreams that her mother had seen for her, and the aspirations that her family had for little mazzan.
Some doctors once told her after she was diagnosed with Lupus that she would never walk again, she would probably be not able to stand up and move on her own nor could do her daily chores by herself.
Today, years later, besides securing the world's best certifications in academic brilliance to her credit, Mazzan stood in front of the world at the prestigious TedX and urged the world to shed prejudices and sympathy towards fellow beings and instead, grow equality and empathy as means of making the world a better place to live in.
Mazzan developed symptoms like feeling high temperature, loss of weight, bloating abdomen and massive hair loss at age of four. She was not in a position to consume solid or liquid as it wouldn't last for a few minutes before her body rejected it. After several diagnosis and tests and experiments, she was diagnosed with systemic lupus erythematosus, an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs.
'It was 28 years ago and there were hardly any advanced medical facilities to understand what the disease was all about and I was too young to understand what I was going through.'
But her determined mother searched for whatever information she could find about the illness through meeting with doctors or books and pamphlets at a time when the internet and google were not even in dreams. .
'I wasn't depressed but was blessed to have such a wonderful family as every single member in the family took care of me. Whenever my mother recognised any other woman with Lupus, she would get in touch with her and find more info about the same'.
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. On an average, out of the 10 women tested, 9 are proved to be having lupus in their body. Although there's an arabic name for Lupus, 'Adhahaba al Hamra', they are trying to avoid this with Lupus.
The journey has just begun. Her family took her to different countries for treatment including France, the UK, Mayo Clinic in the US, Germany, and India. Visits, tests, diagnosis, disappointments, and thus years flew by.
She led a very active, jovial and fun-filled life for years till 2014 when she had a severe lupus flare up that led to vasculitis which in medical science 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 and in her case, it attacked the brain vessels leading to three strokes.
'The three 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.'
As the doctors advised, Mazzan was taken to Germany for treatment by her family. There she was to face some shocks in life in the form of doctors warning her to accept, if it happens, the inability to drive again or to go back to work one more time. She was then told that continuing her masters degree which she had begun before getting the stroke would be inadvisable and dangerous for. Instead of falling into depression, she expressed her love for life by saying, 'it was the God to decide on what I should do and don't do but with my faith in God, my family’s support and my determination I will do everything you said I will not”.
After nearly a year's stay in Germany undergoing different treatments, between chemo doses to reduce the inflammation of the vasculitis and the rehab center, she took her first steps in life after so many years. Her brother who was with her couldn't hold back but cried out loud thanking the Almighty and fell into prostration.
'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,' Mazzan made a futile attempt to hold her tears back.
One incident that literally moved her was when she lost her hair due to the chemo sessions and her mom consoled her saying the hair would grow fast and prompted her to get the hair cut so that it will grow evenly.
'She took me to the nearest beauty salon and before I could sit on the chair, she grabbed a scissors and cut her own hair saying we were going to griw hair together. If I didn't have my locks, she also was not going to maintain hers. It was a highly emotional gesture from my mother,' pauses Mazzan
Sooner or later it was during her constant visits to the hospitals, tests and diagnosis and immunity boosters that she realised there have been many such Lupus patients who needed support. It was then she thought of sharing her experience with the rest of the world through social media platform and thus born the 'Lupus Oman' social media handles. Through these groups, the message that she wants to send out is that 'we the lupus warriors, can live a life that’s full of accomplishments, fun and adventures just like any other person, so stop looking at us and treating us like an infection in some cases.'
These Lupus groups today educate themselves, families and people around them on a constant basis.
'I'm pretty sure that 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.'
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.
Today, she dreams 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,' Mazzan started sharing her answer to a question popped up in the group, underlining the fact that 'it was just the beginning.'
Some doctors once told her after she was diagnosed with Lupus that she would never walk again, she would probably be not able to stand up and move on her own nor could do her daily chores by herself.
Today, years later, besides securing the world's best certifications in academic brilliance to her credit, Mazzan stood in front of the world at the prestigious TedX and urged the world to shed prejudices and sympathy towards fellow beings and instead, grow equality and empathy as means of making the world a better place to live in.
Mazzan developed symptoms like feeling high temperature, loss of weight, bloating abdomen and massive hair loss at age of four. She was not in a position to consume solid or liquid as it wouldn't last for a few minutes before her body rejected it. After several diagnosis and tests and experiments, she was diagnosed with systemic lupus erythematosus, an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs.
'It was 28 years ago and there were hardly any advanced medical facilities to understand what the disease was all about and I was too young to understand what I was going through.'
But her determined mother searched for whatever information she could find about the illness through meeting with doctors or books and pamphlets at a time when the internet and google were not even in dreams. .
'I wasn't depressed but was blessed to have such a wonderful family as every single member in the family took care of me. Whenever my mother recognised any other woman with Lupus, she would get in touch with her and find more info about the same'.
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. On an average, out of the 10 women tested, 9 are proved to be having lupus in their body. Although there's an arabic name for Lupus, 'Adhahaba al Hamra', they are trying to avoid this with Lupus.
The journey has just begun. Her family took her to different countries for treatment including France, the UK, Mayo Clinic in the US, Germany, and India. Visits, tests, diagnosis, disappointments, and thus years flew by.
She led a very active, jovial and fun-filled life for years till 2014 when she had a severe lupus flare up that led to vasculitis which in medical science 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 and in her case, it attacked the brain vessels leading to three strokes.
'The three 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.'
As the doctors advised, Mazzan was taken to Germany for treatment by her family. There she was to face some shocks in life in the form of doctors warning her to accept, if it happens, the inability to drive again or to go back to work one more time. She was then told that continuing her masters degree which she had begun before getting the stroke would be inadvisable and dangerous for. Instead of falling into depression, she expressed her love for life by saying, 'it was the God to decide on what I should do and don't do but with my faith in God, my family’s support and my determination I will do everything you said I will not”.
After nearly a year's stay in Germany undergoing different treatments, between chemo doses to reduce the inflammation of the vasculitis and the rehab center, she took her first steps in life after so many years. Her brother who was with her couldn't hold back but cried out loud thanking the Almighty and fell into prostration.
'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,' Mazzan made a futile attempt to hold her tears back.
One incident that literally moved her was when she lost her hair due to the chemo sessions and her mom consoled her saying the hair would grow fast and prompted her to get the hair cut so that it will grow evenly.
'She took me to the nearest beauty salon and before I could sit on the chair, she grabbed a scissors and cut her own hair saying we were going to griw hair together. If I didn't have my locks, she also was not going to maintain hers. It was a highly emotional gesture from my mother,' pauses Mazzan
Sooner or later it was during her constant visits to the hospitals, tests and diagnosis and immunity boosters that she realised there have been many such Lupus patients who needed support. It was then she thought of sharing her experience with the rest of the world through social media platform and thus born the 'Lupus Oman' social media handles. Through these groups, the message that she wants to send out is that 'we the lupus warriors, can live a life that’s full of accomplishments, fun and adventures just like any other person, so stop looking at us and treating us like an infection in some cases.'
These Lupus groups today educate themselves, families and people around them on a constant basis.
'I'm pretty sure that 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.'
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.
Today, she dreams 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,' Mazzan started sharing her answer to a question popped up in the group, underlining the fact that 'it was just the beginning.'