I am a survivor of SJS. It happened to me back in year 2002 when i was just 12 years old, the medicine and technology was not much advanced. Initially i had sore thorat fever and doctor prescribed me Septran (sulphamethoxazole). Right after 2 days of dosage my eyes started to turn red and skin started to show blood patches. I was taken to hospital at that time many doctors were even unaware of such type of disease. Nobody knew what has happened to me. So they tried changing medicine again and again which worsened my condition. It took me a complete month of hospitalization to get up on my feet. My whole body outer skin was detached i could not see i could not smell or taste .. the blisters were not just on the outside of the body but also they were inside my internal organs as well. Doctors Said to my parents that its a miracle this child has survived but there is a chance he would lose one sense. Alhamdolilah today i am 32 years old father of 3 sons and i am all fine with all my senses. I just wanted to share my story Thank you for reading .
thanks for sharing, i'm currently medical student from palestine, one thing i can tell you is that SJS is now well taught in medical schools, almost every one knows about it in the first 3 years of med school.
God bless you! I also had this in 2004 when I was only 13 years old after a reaction to Bactrim for a suspected UTI. Do you take anything today? I was given Sandimmune and told I had to take it for the rest of my life, but my criminally negligent parents never took me to the Rheumatologist as instructed by the ER physician, so today after struggling with Long Covid for the past 4 years (after having pneumonia for 3 times in the months), I have been diagnosed with Lupus and am trying to connect the dots here. 😮
@@minaso81307look up the consumer product information for any drugs you might be taking . Eg This condition is listed as a rare side for Salpraz a PPI proton pump inhibitor , and also SCLE subacute Cutaneous Lupus Erythematosus . Amd he did mention some vaccines have it as a side effect so there’s that too.
Alhamdulla🥲❤️may allah bless you and your family❤️thanks for sharing your story..as said above SJS is now a well taught object and almost all doctors know about it ..I hope nobody faces what you did🥲
I’m a survivor of SJS, I had it when I was only 6. It’s the only thing I remember FULLY from that age. I remember sitting at the dinner table at my grandparents house, and eating chicken noodle soup when the blistering in my mouth started. They took me to the doctor around 10 times in the span of a month, and doctors kept giving me different diagnosis, and antibiotics. It was my tenth time going to the doctor, there was a new doctor who had come down from California, she was the doctor who saved my life. She had only seen one other case and knew immediately what it was. I spent 9 months in the hospital and all they could do was wait for my 15 different medications to wear off. 9 months of laying in a hospital bed with blisters, swelling, and pain, LOTS of pain. I barely ate anything, and only drank milk, everything would burn my mouth. I vividly remember my kindergarten teacher bringing me toys every day after school. My doctor hooked me up to the IV and told me that the IV was my robot helper so I wouldn’t be so scared. I spent so long in the hospital, my mom thought I wasn’t going to make it, but God had different plans for me. 1 month after I got out of the hospital, I started going back to school, I feel asleep on my desk for about 4 hours, and my teacher just let me sleep. I ended up spending only a half a day at school every day for the rest of the year, I would get home and just sleep. Now, I have severe eczema and severe asthma because of it. I get extremely anxious around doctors and in doctors offices and hospitals. I have scares on my arms, hands, legs, mouth, neck, and back from blistering and needles. I now understand how lucky I am to be alive today, people need to understand the importance of good healthcare.
I'm a 12 years survivor of SJS, I was diagnosed in October of 2012. My reaction was caused by Bactrim DS, and because of this condition, I can not have anything containing sulfa drugs, nor can I have anything that includes sulfa fillers as well. Due to this condition, it's made me allergic to paprika, advil, ibuprofen, acetaminophen, penicillin, amoxocillin, and Tylenol, as well as any generic antibiotics, because they contain sulfa fillers. As a survivor, I wanted to thank you for covering this topic. I have various friends who have just been diagnosed and haven't heard of this. The SJS community feels as though we're not heard, and you've made sure people will listen.
I had thos as a 5 months old baby way back in 2002 in Nigeria. My mum and dad said I was used as a case study but medical students of ophthalmology and dermatology department then at the university teaching hospital I was a patient in . I almost died and my parents were told by the doctors that there was a 50% chance of survival and if I survived at all I might be left with no sight meaning I would be blind . But then with God, my parents and relatives I pulled through although I'm left with a low vision . Doctors are always baffled by my story of surviving SJS as a 5 month old but then I survived and today I'm 22 years old . Although the scars both physically and emotionally because I was bullied as a child as a result of the features I more or less assumed which includes a pair of greyish blue eyes and a mixed colour skin I am pulling through everyday . I live with my low vision and I have adapted to my environment pretty much easily . If you are out there and you're dealing with SJS or TEN just know it's not the end you'll definitely get out of it. Lots of love 🥰🥰🥰
May the Lord continue to keep you and grant you long life Much love from Korlebu Teaching hospital, Ghana❤ I actually have an SJS case to present to my consultant tomorrow as a medical student so I came to watch this video to learn more about it. And I'm really touched by your story .God bless you for allowing medical students to use your case to learn cos this is the only way we can train to become good doctors for our generation and the ones yet unborn ❤
I had this in 2022. Still kind of haunts me because I was sent to an burn hospital 2 hours from my town in an ambulance. Was there for 5 days. It was terrible and embarrassing. The worst part of it all was that it was triggered buy a mood stabilizer that was supposed to help a mental health disorder. ☹️😒😄😵💫😬😟😑 The doctors wanted to know if I was depressed!!! 😂 I felt like saying "a medicine that was supposed to help me nearly killed me! And you want to know if I'm depressed?!?!" Thankful to God for my survival. The hospital nurses and doctors saved and helped me.❤
It’s terrible, I got it when I was 8 back in 2011, wasn’t on medication though, wasn’t on anything so to this day we still don’t know what caused it, left me almost fully blind, missing most my fingernails, rubbery skin and poor cardiovascular system
@@IDropzGuitar Oh my goodness!!! One of my first symptoms was what I thought was pink eye. I read about the side effect after I was resting in the hospital and was visited by an eye doctor. I pray you are ok today. So sorry you never found the cause.
@@iheartwaffles91 wow, see everyone’s experience is just so different, I was all good, I remember I went to the horses here and played with all the kids and that and idk if I caught something off another kid I just so happened to be allergic to, but I was fine and just woke up with blisters all over my skin, and feeling crook, my mum and brother thought I had Chicken pox and basically woke up in a hospital from a coma a few weeks later not knowing what was happening, how are you eyes from it and your skin?
I nearly died from Toxic Epidermal Necrolysis in 2007 only a couple months after I turned 30. We believe it was caused by an NSAID, Piroxicam. I was in an ICU burn unit for 5 weeks, and for 3 1/2 of those, I was in a medically-induced coma. There was one week where my chances of survival were only 30%
I had many painful moments in my life including cancer treatment but man, Steven Jhonson syndrome kicks different. Going to the bathroom was worst. Cant even describe the amount of pain from both ends. Currently have symptoms again so i found myself here. I hope it wont progress far enough this time
Did you have any special trigger for SJS? were you under stress? can stress be the main reason? (I was diagnosed with TEN 3 weeks ago and could not find any other reason except stress)
I had sjs as a teen from midol. No one could tell me what was wrong as I was asked if I took medication and I didn’t consider midol or Tylenol to be medications… in my super smart 13 year old brain, over the counter meds weren’t really medicine. I thought you needed a prescription for all real medicine. I ended up figuring it out almost a year later as every month I’d still take the midol not knowing I was poisoning myself.
I had Mycoplasma Induced Rash and Mucositis/MIRM, previously known as atypical SJS back in July. I got mycoplasma pneumonia at the start of July, it took 3 different doctors before they gave me anything, but then they gave me azithromycin and I started to get better. But then I started getting rashes that would come and go and my eyes turned red and the whole inside of my mouth started peeling like in SJS. I was in the hospital but since it was just an immune response there was nothing they could do. Definitely would not recommend.
Yes mine too. Im 55 single mom of two who looks forward to each new one. Love to pick your brain about menopause & failed cervical acdf surgery thats created a “pain disorder” because Im in recovery, cant take all those pain meds & am only human as the hardware has failed & now will need a full laminectomy from back. Omg its been 2 years of the worst pain, failed surgery & shots no relief it affects you psychologically. Thank you sincerely for what you do here ❤
Sorry for your loss, it's horrible illness! I barely survived it at 10 years old and have had life long compactions and was told I would be lucky to see 35 years old due to the large doses of ACTH (human steroids) for two year to keep it at bay. The massive doses of ACTH shut down my Immune system that was attacking my own body from SJS. I'm 63 now but as clear as yesterday I still remember those dark days and night I suffered for months. I eventually could walk talk and eat after the 4th month but was very weak. A year and a half later I was basically back to normal and became a very good athlete in football and basketball I ran 8 miles a day for years but the emotional and physicals scare's remain! I'm sorry your family had to see it first hand and lose a loved one. Prayers!
That’s absolutely terrible man, sending all prayers your way and condolences, it’s such a deadly sickness, I almost lost my life to when I was 8 back in 2011 I got very lucky, although I suffer from the effects still to this day! Sorry to hear about your loss
@@stephdeferie5662 I’d like to do some videos on it just talking about my experience and that, sorta wish I had pics of it lol but sorta glad I don’t as well, but thank you and you too, hope all goes the best!
And the health care industry is here to heal you but medical mistakes are one of the leading causes of death in the US....and all that at a price nobody can afford.
