Patient Perspective: Jane Burns SJS story

[@ninime1270]

Hello from Germany, I‘m a survivor, too. I suffered TEN in 2022. I lost my whole skin. I still have scars on my skin, but I‘m good. So happy to be alive 🙏🏾 Thank you for this video 🌸

[@shouvikgayen707]

How long did it take to heal?

[@shouvikgayen707]

How many days?

[@ninime1270]

@@shouvikgayen707 It took about 45 to 50 days to heal. It was extremely painful

[@kepi.n837]

hello, are recovering well rn ? which part of you that still have scars ?

[@ninime1270]

@@kepi.n837Most of the scars are along my legs and my belly, like acid burn marks. And I do have a pigment disorder, too. My legs took longer to heal, that the rest of my body. Today, I feel healthy and I‘m in good shape, again. I thank God to be alive 🥰

[@artworksbycrystine]

Hello. I am a survivor like you. I had SJS-TENS in August of 2019, and remained in a Burn ICU for just over a month. I also lost about 65% of my skin, but i had extensive mucosal involvement so my life did not return to some semblance of normal for about 2 years. Like you I also do deal with complex PTSD from the experience and continued anxiety that the reaction could happen again. I also participated in a study conducted here in the States on the pharmacogenetic nature of SJS-TENS, and that has been very gratifying to do. Thank you so much for sharing, it is so incredibly validating to see stories like this

[@lorriefitzgerald6233]

I am from America and I really think more doctors should how to see sis or tens physical signs of the disease to stop progression so that patients can survive. Every survivor is a miracle. I know because I personally have been through also, in fact, going through it now.

[@acmedsci]

Hi Lorrie, thank you for sharing your story. If you feel you might find the 'SJS Passport' discussed in this video, please find more details here: www.sjsawareness.org.uk/index.php/get-involved/research-studies

[@janetwharton3985]

Yes Jane I also suffered with Steven Johnston syndrome. Due to tegratol. I was 16. I very nearly died. I was very lucky. I spent 8 weeks in hospital. Still suffering now with my eyes and stomach stomach. Fortunately I survived and had my beautiful children. Xxx

[@RebeccaHeartsJuvia]

I’m proud of you for getting through it!

[@peterceferin-m1g]

i got sjs today . im so happy it wasnt so severe . im lying in hospital right now

[@malicespyte3862]

I'm a survivor too. Had the worst case seen in Canada, at the age of 12. Found out from my mother, that the Doctor's told her to say her good bye's to me. Had pictures too, put in a medical journal. No long term conditions, luckily. Would never wish this on anyone

[@off2u4ea99]

My wife had TEN, she actually had nine TENs (nine tenths of her mucus membrane was affected). She handled it like a champ, but I fell apart. I always put on a brave face in the hospital, but I still have PTSD from watching her go through such hell. I had never heard of an SJS passport, but it's a fantastic idea.

[@miguelcabrera9152]

I’m from California and I’ve had this at least 3 times. Had doctors from all over the world flying out to study my body.

[@ninime1270]

Did they found out, what caused this reaction?

[@miguelcabrera9152]

@@ninime1270 they said my my body would attack my own microplasma. Basically I’d get a cold and it would develop into pneumonia and it would develop into stevens Johnson after about two weeks. It has happened to me like that every time I’ve gotten it

[@miguelcabrera9152]

@@ninime1270 they originally thought I was having a allergic reaction to Azithromycin that I was being given but they ruled that out later around my 2nd time getting it.

[@ninime1270]

@@miguelcabrera9152 So sorry to hear you went 3 times through this. I suffered TEN and it was the most painful experience. Take care ❤️

[@Madocthevindicator]

My symptoms were full body rash, blisters in the mouth, fever and pain. It was almost impossible to eat or drink anything. I was dying of liver disease after a medical detox from alcohol, so they put me in a room for observation and 6 or 7 doctors came in and out for a week. I would get up at night and steal snacks and walk around with no supervision. One meal they gave me was tomato soup that burned my mouth and throat due to acidic content. The nurse couldn't understand why. Redding CA, Mercy General. A scum pit of a hospital. Gradually, I got better and asked to be discharged. They never gave me any meds except pain killers. A very bad experience, and I never found out which meds gave me the condition. I nearly died from my airway being partially closed, they didn't seem too concerned about that.

[@ema_9]

thanks for making this video. I am recovering from sjs

[@barbarahartlett5400]

So sorry Maine state is killing my son intentionally with sjs to steal his federal grants n insurances .it's torture n horrific to have him suffer with no medical intervention at all.burning alive inside out.slowly till hemoraging n organ failure.

[@acmedsci]

Hi Elise, thank you for your comment, and thank you for sharing this with us. If you feel you might find the SJS passport discussed in this video useful, we can help you connect with Anita Hanson, a Research Matron at the University of Liverpool and Liverpool University Hospitals NHS Foundation Trust. She set up a Patient group over 10 years ago and co-produced the ‘My SJS Passport’. This booklet is a helpful tool to store all relevant information about your diagnosis of SJS and useful when attending follow up appointments to manage any longer term health needs you may have. More information here: www.sjsawareness.org.uk/index.php/get-involved/research-studies.

[@panzadlova7030]

Can't we have sjs support group or something ?

[@peachtrees_]

how is your recovery going along?

[@MouriceOudo]

My daughter is 6yrs and now he as the Sam condition now it's very scary pray for her

[@Goofyyyyyyyyyyyy]

Hi I'm from India I'm still suffering from this disease my eyes got affected 13yrs ago. My eyes still cannot recover yet suffering from dry eyes😢 can you suggest something please

[@zeeshy2896]

Hellow am still recovering from sjs…kindly anyone to tell me what removes the scars ill be gratefull😭😭

[@Shaunthesheep8]

Hi.. I've been through this 5 months ago and still recovering, I went to my dermat and he suggested me some cream and tablets which had biotin. You should contact a dermat and take the prescribed medicine.. hope it helps

[@ThomasBone-o8h]

Brekke Glen

[@wilmotfulton4400]

Young Patricia Gonzalez Mark Rodriguez Scott

[@californiadoll6273]

Stop reading your story and just TELL US WITHOUT READING IT! You're not doing a federal news conference, it's unnecessary!

[@CinnamonForest-m7k]

what's your problem with her reading it ?