Hi folks, few days ago I've met Fajjar, a young girl from Canada who lived a SJS when she was 6 years old. She's now 18, and this pure soul want to help us to find a ray of light, by spreading kindness and hope. Please read her beautiful story.
1/ PRESENTATION
Who are you ? “ Hi my name is Fajjar, I was raised and currently live in Canada. As I am writing this, I am 18 years old. I live in Toronto, alongside my wonderful family of 8.”
Introduce yourself :
“ People often describe me as reserved and quiet. Making friends is quite easy for me despite my quietness. I like to live free of judgement and I give others the opportunity to open up to me. I like to hear about the issues of others because awareness and empathy is something I abide by. I think that if people were more open about their issues the world would be a much better place.”
What are your passions / hobbies ?
“ My hobbies include reading different articles, being politically aware, and watching documentaries about absolutely anything. I think that is something that is different about me. I like to learn about anything, and I like to leave an impact. This was what made me come to this page, I read the stories of others and they really touched my heart. Knowing that I could relate in many ways made me feel like I was not alone in what I faced. Everyone fights their own battle, that battle can be sickness, a divorce, or even financial instability. I think that understanding others is key. Being able to see through the surface of someone and giving them the chance to be who they are is crucial in order to live a fulfilling life.”
2/ YOUR STORY
What makes you share your story today ?
“ Most of my life I totally erased the part of me that got sick, the part of me that scarred my entire body and left me insecure. I did not share my story with anyone and dismissed my facial scarring as freckles. I worked hard to cover this side of me up because I was afraid of judgement. I was afraid people were going to start defining me by this small but tough part of my life. That people would see me as the “Girl who got SJS” instead of Fajjar. I wanted to be normal, and in order to be that I remained silent about my experience. The day I came across this website, I felt ashamed for being quiet for so long.
I felt ashamed because in order to feel like no one would judge me, I was judging and tearing myself down. It was hypocritical of me, the people on this website including Camille are very resilient and strong, they are amazing for speaking out about this.
It took me 11 years to accept myself and accept my experience.”
Which syndrome did you have? How old were you?
“ I had SJS, I did not know I had that though until I came back to Canada and was told by a child specialist at the Sick kids Hospital, I was 6 years old.”
Tell us the story of your syndrome
“ It all started when I went to Pakistan with my parents and siblings for vacation. I began to develop a fever, so my mother decided to give me some Ibuprofen. After I took the syrup, I remember my lips and eyes swelling up, after which my neck began to get chicken pox like spotting. It was very itchy and disgusting, recalling the experience is very horrifying for me, it really left a terrible impact on my childhood and because of it I do not like to even look at childhood pictures of me.
I was admitted to hospital in Pakistan after the spotting came all over my body. My tongue was also swollen and my eyes as well. My fever was very high, and the doctors were very harsh. I remember a lady stabbing a drip into my vein as if I was some sort of liability to her.
I was nothing to them, a six-year-old who they did not expect to recover. I could no longer walk and had to learn again once discharged from hospital. My hair fell off, my fingernails came off, my eyelashes came off. I pulled the skin on the palms of my hands and took it off I had no discomfort, to my surprise it did not hurt me. My eyelashes came off like false lashes and my fingernails came off the same way. Imagine being six and having to see that. It was an experience that changed me forever, I was never going to be the same again.”
What was the worst for you during the hospitalization?
"The fear for me was not really there, a child is fearless, it is the pain they see in the people who surround them. I was not allowed to see myself in a mirror, and the people around me mainly my parents were visibly in pain. The sadness in the surrounding environment bothered me the most, I did not understand why they were sad, little did I know SJS is very uncommon in Pakistan and they told my parents that their six year old daughter would die. I can only imagine the grief my parents faced when hearing that and the impact it had on my sisters. I was afraid that because of me they would never be happy, and I wanted to get out of the hospital as soon as possible because I wanted my parents to be happy again."
How was the nurses and the doctors with you ? Did they play an important part of your stay?
“ The nurses and doctors in Pakistan were confused, they did not know what was wrong with me and they ended up re prescribing the ibuprofen that triggered the SJS in the first place. Luckily by the mercy of God my mother was aware that the medicine was the reason for my sickness to start and they confronted the doctors about the careless and deadly error of prescribing the medicine again.
After noticing the careless way the doctors were treating me, my dad decided to call a doctor to Pakistan from the United States. When he arrived, he instantly knew what he was dealing with, he stopped the mistreatment and began to carry out a proper plan to stop my illness from progressing. Eventually my fever went down thank to this doctor and God, and I was discharged from hospital after my doctor challenged me to stand up and I did.”
How did you feel when you left the hospital ?
“ I felt very happy when I left hospital, it felt like I was out of prison. I could not sit down in the car and had to lean against the window in order to sit up. My dad drove us to an area where a lot of poor people were, he gave charity for God’s sake and we went home.”
Did you start to eat normally quickly ?
“ I did not start eating quickly, they often times would try to make me eat cerelac (baby food) so it would be easy for me to digest. I could not taste it at all, my taste buds were swollen. I loved pizza however, my dad realized this and began to order me pizza because I was okay with eating that. I could taste it.”
What are your after effects ? How does it envolve ?
" My eyelashes, hair, fingernails, and even the skin on my palms came off. They all thanks to God, his grace and mercy have come back. My scars are still there, its been 11 years, some scars have disappeared completely but others are still there such as the scars on my neck, back and part of my legs. My skin is sensitive and my lips often get chapped easily but that is easily treatable with chapstick and moisturizer. I thank God every day for the second chance he has given me, and I am very grateful to him for giving me full recovery. "
Did you have a medical follow-up after the hospital or some treatments ? Which ones?
“ I had a follow up once I came back from Pakistan. They gave me some creams to lighten my scars, and they did follow ups until they knew of no complications I faced.”
Did you talk about your experience and your feelings to a psychologist, to put some words on your emotions? If you did not, do you think it could have helped you?
“ No I did not actually, I think that might have left an everlasting psychological impact on me, I often times deal with a lot of negative thoughts but now I have learned to fight them off.”
Have you been concerned about the way that other people look at you after your syndrome? What did you do to be less affected by that?
“ I was afraid to go back to school after I came back to Canada, I no longer had scar less skin, I looked like a whole different person. My scars were dark and other children were rude. They were worried I was contagious, and though I made friends they often asked questions I did not want to answer. The questions hurt me, I did not feel normal, I felt like an outcast. I do not wish that on anyone, I do not wish that on any child.
Children deserve love, and being 6 years old at the time, it really impacted me. I sometimes cry when speaking of it because of how much it hurt me as a child. But it also made me stronger in the face of discrimination and disrespect. If I see someone being treated badly now, I will stand for them. No matter what.”
3/ YOUR TIPS
What could have helped during the hospitalization to feel not bad emotionally?
“ I think if the doctors saw me as a human instead of a patient it would make me feel more at home. The doctors were quite rude and greedy, besides the one who came from the United States to treat me.”
What do you recommend to the patients so that their days are less painful?
“ I would recommend that they have patience and trust God. God knows what is best for you, and he loves you. He has chosen you to face this and you will overcome it just have faith in him.”
What did you do after the hospitalization to be less afraid / to change your mind and start feeling good as before?
“ I played with my sisters and cousins. It made me feel less different and took me away from the entire process of recovery. The blood and pain no longer phased me when I had the escape to play with them every so often.”
What kind of tips can you advise us to learn how to feel better?
“ Pray, trust in God and be grateful. God loves you. I also would say that live your life with no regrets, be happy and do what you love. Leave an Impact and stand up for what is right.”
How did your family and your friends helped you to going through this experience?
" My family did a lot, my mom work effortlessly and my dad did too. They prayed and stayed up all night making sure I was okay, other close relatives also took part in helping like bringing food for my sisters who were left alone at home, my uncle helping me to clean my mouth and eyes so I could eat. They really attempted to lift my spirits so I could recover, May God bless my uncle, My mom and dad, my sisters, my grandma, and all those who helped me. I remember vivdly who helped and I am deeply thankful to them. "
What can you advice to the families / friends of patients who are fighting against a TEN ?
" Stay strong and do not be sad, a patient never wants to see their family sad. It only hurts them more, pray for them and give them hope. They need you. "
Did you do some research about the TEN ? Did it help you ?
“ Researching made me accept myself and my experiences. Now I know I am not alone.”
Do you think that another approach is needed to help people after their hospitalization? If so, what would help these people?
“ I think people need a stream of psychological help. They need to get their experience out and talk to someone, they need good friends and a good support system.”
Today, do you think you have regain the taste for life ? Can you tell us if you feel happy, even after this trauma ?
“ I obviously feel happy, I live every day knowing that nothing is guaranteed. Your life can change in a second. Never expect anything from life, because your expectations are what will destroy you.”
What makes you happy every day ?
“ God, my religion keeps me going. I love my creator, I know he is everything I will ever need.”
When sometimes it’s hard to think about this experience, how do you do to escape and to change your state of mind?
“ I pray often, I like to write as well. Poetry is a nice way to disguise your experiences in a way that is so vague no one will be able to pinpoint what you are feeling.”
How has your syndrome changed your life ?
“ My syndrome changed me to see an entirely new side of life not many know about. The side of life that is often stigmatized in society. I believe people act ignorantly towards the idea of a sickness simply because they do not know how it feels to be severely ill or even hospitalized (I do not wish that on anyone) obviously getting sick is not a good thing, but recovering from illness and being able to know how it feels to be the one on the bed is a type of knowledge not a lot of people know about. I see the world as a cave, the cave you are brought up in confines you to the ideas you have and the way you treat others. When you get to know and experience things outside that cave, only then you are enlightened to understand what life really means.”
If you want to speak about something I’ve forgot, do not hesitate <3
“ I wish anyone reading this the best for their future, you are not alone in what you face. You are strong, capable, and very bright. Trust God and your future, he has a plan and he will never burden you more than you can bear! God bless you all. I also want to thank Camille for creating this amazing page, you are amazing for doing what you do. 😊”
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Thank you so much Fajjar. This project is not only about TEN/SJS and trauma, that's exactly what I want to show to the whole world. Every fighter have a million of opportunities to spread love and good vibes to each other. Kindness is everything, our world is full of mystery, beauty and amazing stories. This story made my day brighter and my heart is full of love RIGHT NOW. Together stronger. Never give up.