Hi everyone !! I didn't write since October 2018 but I had a lot to do... Thanks to other heroes, I can post more often ;-)
Here is the first interview in English, I really want to show to future patients and others fighter that there is a happy end to the nightmare :-) Let me introduce Amanda.. This beautiful and strong lady is here to share her story, her feelings about the disease, to give a sense to her TEN, to help fighters like you who are looking for hope and tips to survive the trauma...
Let's start ;-)
-- PRESENTATION --
Who are you ? "My name is Amanda Ng, I’m 24 years old and I’m currently living in Kuala Lumpur, Malaysia. I am an assistant architect however I will be leaving my job soon to continue my studies in Perth, Australia."
Introduce yourself :
"I think it’s quite hard to identify my own individual traits as people might think differently but I would like to think that I’m considerably generous, kind and social. I like to help people because it’s in my nature, so if ever you need assistance, you know where to find me"
What are your passions / hobbies?
"I don’t really have hobbies anymore because I’m so preoccupied with work. Plus with my medical condition, I can’t go out under the sun, therefore my activity choices are very limited. If I had my free will again, I would like to travel and take a lot of architectural and landscape photos. I also happen to miss drawing and painting - one day I aim to continue that passion again. "
-- YOUR STORY --
What makes you share your story today?
"Camille! She messaged me asking if I would like to contribute to spreading awareness about Steven Johnson’s Syndrome/Lyell’s Syndrome (Toxic Epidermal Necrolysis). I think it is a great opportunity for me to give people an insight to what it is really like to have had this illness, as I know, not many people can understand the amount of pain that we have been through. "
Which syndrome did you have? How old were you?
"I was 22 years old when I had Lyell’s Syndrome, which is also known as Toxic Epidermal Necrolysis (TEN). I had a severe allergic reaction to penicillin/Augmentin and I lost 70% of my skin. "
Tell us the story of your syndrome "Wow, where should I begin? To be honest, the beginning was quite a blur for me. I remember being sick in October 2016, I had tonsillitis, so I went to the local clinic and was given Augmentin. I started getting a fever and my eyes became red. After days of taking the medicine the doctor had prescribed to me, my fever did not subside - it went up to 40°C. Red spots started appearing on my body, for a moment I thought I was bitten by mosquitoes, so I ignored it. Then I realized that the spots started progressing and my fever felt even higher than before. My parents then admitted me to the emergency room.
We went to a private hospital and waited at the emergency room, waited for hours until it was my turn. The doctors took numerous tests and still did not understand what was wrong with me. My parents started noticing that my gums had turned black, so they decided it was best if I stayed overnight at the hospital. My fever kept on progressing and I felt incredibly light headed. I went to the toilet to look at myself in the mirror and I saw my face, it was turning black with reddish spots. I went to sleep hoping that the next day everything would get better, it did not.
The next day, I waited for hours until I saw the dermatologist, my blisters did not improve and neither did my fever. It was then that the doctor realized that I had Steven Johnson’s Syndrome. I immediately had to be rushed to the ICU and after a long discussion between my parents and my doctors, they said it was best for me to be transferred to a government hospital, as they had a specialized team to deal with this symptom. I remember being in the ambulance and honestly; I did not know what was going on. Everyone had a worried look on their face and I just felt so confused because no one wanted to tell me the truth. When I got to the hospital I had to wait until I could get a room in the ICU unit. After hours of waiting I managed to get a room and I saw my parents crying in the corner.
After that last vision, every memory I had in the ICU became a blur because I was under a heavy amount of morphine. It was not until I got transferred to the dermatologist ward that I found out the truth. My Steven Johnson’s Syndrome had progressed rapidly to Toxic Epidermal Necrolysis and my parents were given a 48-hour period to see whether I would make it. They were told that I had only a 40% chance of living. I had severe pneumonia, hepatitis and my kidneys were failing. The doctors advised my parents not to show me images of myself, so it would not affect my willpower.
Each day I had to wake up at 5 in the morning to have my breakfast and prepare myself for my dressing session. Every dressing session was torturous, whenever the nurses poured water on my back, it felt like they were pouring acid on my back. The pain was so unbearable that they had to give me a high dosage of morphine to ease the pain. I had to be on morphine for 15 days. I was discharged from the hospital about a month later.
After my hospitalization I had lost my nails, eyelashes, eyebrows and hair. I had low self esteem for quite some time but I kept on telling myself that you should not worry about what people think because they don’t know your story. Even though I was suffering from low self-esteem, I flew to Australia to continue my studies in architecture. I thought I would not gain any friends due to how I looked but ultimately, I made a lot of friends and people admired the amount of willpower I had gone through. I graduated with high distinctions and successfully graduated in February 2018 without any failure."
What was the worst for you during the hospitalization?
"The pain was the worst feeling. Whenever the nurses had to do a dressing session I always screamed because it felt like someone was pouring acid all over my body. Moreover, having to stay in the hospital for over a month caused me to go a little bit crazy because I felt so trapped in an enclosed space. I was not allowed to walk out of my ward for fear that I would get sick from the air pollutants. The greatest challenge I’ve learnt from this experience was patience."
How were the nurses and the doctors with you? Did they play an important part of your stay? "The team of doctors and nurses were amazing! I honestly don’t know what would have happened if they did not treat me. I think I had no less than 10 staff members assisting me because of how severe the TEN was. They were like a family to me, they supported me every single day, persisting that I keep my will strong in order to survive and beat TEN. "
How did you feel when you left the hospital?
"Relief! You have no idea how mentally traumatized I was for being in the hospital for over month. It felt like I was in a new environment again, seeing all the people, architecture – it was quite refreshing. I cried when I was in the car, I think it was mainly because I was overwhelmed by the fact that I had managed to survive the unthinkable. "
Did you start to eat normally quickly?
"No, it took me about 3 weeks to be able to eat properly because my mouth was filled with ulcers. It was so hard for me to eat and drink. I also lost the ability to taste food because my taste buds were badly affected, because of this I lost about 7kgs. "
What are your after effects?
"During my hospitalization, I had lost all my hair, which included my eyebrows and eyelashes. Furthermore, I lost all my toe nails and finger nails. It has been two years since my hospitalization and my nails, eyebrows and eyelashes still have not fully grown back. They will come back but it will just take time. "
Did you have a medical follow-up after the hospital or some treatments? Which ones?
"I had to see several doctors after I got discharged, I have a team of ophthalmologists, dermatologists and ENT (Ears, Nose and Throat) specialists. I currently have dry eye syndrome and I’m required to put eyedrops every hour. I sometimes use special glasses to protect my eyes from the blue light that is emitted from our every day electronic devices. "
Did you speak to a therapist about your experience or feelings? If you did not, do you think it could have helped you? "After I got discharged from the hospital in December 2016, I immediately applied to continue my studies in Perth, Australia. I felt very vulnerable, having to just come out of the hospital and my skin did not fully heal. For the first few weeks of transition, I went to the university counsellor to help me overcome my fears. I had a hard time coping because I constantly got paranoid about what people thought of me. Ultimately, I didn’t have many sessions, I think I only went to 2 sessions. I decided to work on my issues by myself and had to overcome my own fears, I told myself that the best way to heal from this was to talk to people about what I had gone through and see how they would react. I was shocked, I realised that I was just feeding on my own fear and people were so compassionate. They saw beyond my appearance and really admired my strength and determination."
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?
"Initially yes, I was very self-conscious about how I looked. But then, I realised that it was not worth worrying about your looks because people don’t know your “story”, once they find out, they start changing their perspectives on how they look towards you. You should learn to love yourself first, if you find that inner peace, you’ll start viewing the world in a different light"
-- YOUR TIPS --
What could have helped during the hospitalization to feel not bad emotionally?
"I think two of the biggest things that helped me emotionally were to stay away from mirrors and social media. You need a lot of emotional support from family and friends. To be honest, this experience has really opened my eyes to seeing who my true friends were. I lost a lot of people during this journey, but I am grateful because now I know who were there for me. "
What do you recommend to the patients so that their days are less painful? "Take a lot of morphine? Hahaha. I was given morphine for 15 days when I was in the hospital to cope with the pain. It really depends on what the doctors prescribe and your pain threshold, some people go into medically induced coma because they cannot handle the pain. My hospital did not have a TV, so if you do have a TV, lucky you! What I did to pass time was to just sleep a lot, speak to my family and friends and listen to music."
What did you do after the hospitalization to be less afraid / to change your mind and start feeling good as before?
"To be frank, I never had an issue with being afraid. I think the whole time in the hospital I was trained to be a fighter. I mean surviving this illness was a big challenge, the doctors told my parents that I had a 40% survival rate and I managed to beat it. The success of it is to have the right mindset. I’m going to be honest, those people who unfortunately did not make it did not have the right mentality. I was told by my doctors and nurses that they had given up; therefore, they didn’t survive in the end. Don’t let your fears eat you up, that’s the worst thing that could happen. Just smile and everything will be alright!"
What kind of tips can you advise us to learn how to feel better?
"Sometimes you need to keep yourself really preoccupied, do things that keep you busy or to distract you from overthinking. If your appearance really bothers you a lot, then I would suggest closing your social media for awhile and try not to look at yourself in the mirror too much. That has helped me, I avoided the mirror as much as I could and then gradually learnt to accept my own new beauty from within. Things get better with time, just learn to be patient and enjoy the metamorphosis! "
How did your family and friends help you throughout this experience?
"I wasn’t allowed many visitors during my time in the hospital. Since I did not have skin, the medical staff were scared that I could get easily sick, so they controlled the number of visitations I got per day. My family visited me every day, they made sure that they were always there the moment I wake up. My dad made sure he got all the food that I was craving for, and my mum spent most of the time sleeping with me in the hospital to keep me company. I am so grateful for all the love and support my parents have given me, I don’t know what I would do without them. As for my friends, I kept in touch with most of them through social media. I only spoke to my closest friends, not many people know about my case, I did not feel it was necessary to tell them because not many people are empathetic."
What can you advice to families / friends of patients who are fighting against a TEN?
"I have two sets of advice to give: - Advice for during hospitalization : Spread a lot of positivity in the hospital. Never give up hope and do not allow him/her to see their own reflection until they are fully stable mentally. - After hospitalization : Hydrate hydrate hydrate! And stay away from the sun! The sunblock, moisturizer, water and umbrella are going to be your best friends during this crucial period. You need to avoid the sun at all costs in order for your pigmentation to be even.
Did you do some research about the TEN? Did it help you?
"During the time of my hospitalization, I did not, my parents did but they did not mention anything to me because they did not want to scare me. But after I got discharged, I did some research to know a little bit more of the general information about SJS or TEN. I proceeded to search for more specific things like, “how to take care of TEN” or “things to do when you have TEN” but I could not find such information because this medical condition is so rare. I am hoping that in the near future, there will be more awareness about SJS and TEN worldwide! Camille! We are counting on you! Haha."
Do you think that another approach is needed to help people after their hospitalization? If so, what would help these people?
"Group therapy for hospitals. A little get together session for SJS/TEN survivors with their parents. I think it would help everyone emotionally and gain more insight on aftercare tips from each other. My local hospital has actually touched upon it with me and my mother but nothing has happened yet! Hoping for things to change soon!"
Today, do you think you have regain the taste for life? Can you tell us if you feel happy, even after this trauma?
"I have no regrets. Things do happen for a reason and I am eternally grateful for what has happened to me. I think the biggest thing I have learnt from this experience is to love myself. I think that’s the most important thing that we all must learn. Growing up, I’ve suffered from depression and after this experience, it made me realize how precious life is. I feel so thankful that I was given a second chance to make changes in my life. From this, I’ve learnt to become an even kinder person than I was before and I believe that I am more beautiful too, internally and externally. "
What makes you happy every day?
"My family, pets and friends. "
When sometimes it’s hard to think about this experience, what do you do to escape and change your state of mind?
"To be honest, I never think back about my experience. Though I get flashbacks but that’s very rare. I just try to either: distract myself, keep myself busy or to think of things that makes me happy. "
How has your syndrome changed your life?
"TEN has been an eye opener for me, it has showed me who my true friends are and has taught me not to be shallow. I believe that things do happen for a reason, from this experience I’ve learnt to be kinder and sympathetic. I have learnt to see the beauty in everything and within myself. Every day I am thankful for being given a second chance in life. "
You are free to write... ;-) :
"I think the most important advice I have for those who are going through either SJS or TEN is to just have patience. Do not question how long it will take to fully recover because we all have our own healing process. I know this because I have done countless research on these cases and asked a lot of survivors how long it took them to heal and they all gave different answers. Just give it time and every month you should take pictures of your progress to see how fast you’re blossoming! "
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THANK YOU SO MUCH dear Amanda, to share this powerful story with us. I'm so proud of you, 'cause telling our story is hard sometimes, but it's also a kind of therapy. Thank you for giving us hope, and thank you for spreading love around you. You are a beautiful person, and the world needs more people like you... <3 Thank you thank you thank you. <3 <3