I am the Swamp Witch: SJS Survivor (Caution: a bit of medical gore)

[Swamp Witch]

Hi oak

Thanks it was fun to go perform again!

Oh cool, I hope there are more effective treatments now because it. Is. GNARLY lol. In my case it was kindof palliative in a lot of ways, bc there was nothing to be done to stop the reaction or lessen the severity. Lots of damage control.

Interestingly I did have a bit of a bleeding edge treatment, from what they told me. They called it a "gamma globulin treatment", administered in my IV. I don't know about now but in 2019 it was not considered standard procedure and some physicians did not think benefits outweighed drawbacks, but my team of docs gave me this treatment first thing after they decided it was SJS/TEN. I wonder sometimes how big a part that played in how well I've recovered in the face of such a severe case. I was also being treated in one of the greatest burn centers in the country (I live only a couple hours' drive away), so I got pretty great care all around too.

The frightening thing about SJS/TEN is that it can be caused by a huge variety of drugs, even drugs you have tolerated well before and have used many times. NSAIDS like ibuprofen and naproxen have a higher risk for causing it, as do sulfa antibiotics. So now, on the advice of my brilliant late surgeon, I do not take NSAIDS or sulfa drugs and am now considered allergic to them, even tho I have always tolerated them well.

Thanks for the support here y'all, this is so nice and you guys are great :')

[Mental Fairy]

Hi swampwitch
I hope you don’t mind but it’s taken me a bit to process your difficult times. I just sat here today and my husband and I read your story and I have to admit it brought a tear. Yours so strong and I can hear that. Your an amazing person. I haven’t had this condition but seen it only once in my medical career. That case was not as bad as your experience. This hit me hard as I tend to take on others suffering and I 100% know you are so much stronger for it.
I wouldn’t wish my bowel disease on anyone but I’m glad I have it and not someone else!

I send you a hug from your mentalpod forum.

[oak]

Well said, Mental Fairy.

Also, SwampWitch, you may want to periodically check the NIH site for SJS studies. Here is a link for SJS studies that are recruiting:

https://beta.clinicaltrials.gov/search?patient=Stevens-Johnson%20Syndrome&locStr=&distance=0&aggFilters=status:not%20rec&limit=100&page=1

(I mention this because I participated in a Phase 3 study for a sleep apnea device.)

[Swamp Witch]

Omg! Oak

One of those studies is being run by the physician who led my case in 2019! I am not eligible for it as I'm not in the first week of the acute phase, but I sent an email so they have my contact info in case there is anything I can participate in. Hopefully I can use my experience to further our collective understanding of this bizarre and devastating condition.

And Mental Fairy, you are the sweetest thing. Sending you hugs and good vibes all day today.

Take care y'all.