since I’ve sent out the link and made an entry here. I think some people have seen this on my goals and hopefully I have contributed in some way to awareness of SJS. 5 years ago

Let’s see if I can add a link here to the fact sheet about SJS:
FACT SHEET

Both my youngest son and I have had allergic reactions to medicine. Luckily we found out before any further damage was done. Not everyone is that lucky. I do think it’s important to understand what can happen as side-effects of medicine. 5 years ago

Even though I value my friendship with Reverie.

Can always return to this at another time. 6 years ago

Thanks to Hoff Toddie who is always willing to take up a good cause, I too am spreading the word about this.

I am allergic to several drugs. Fortunately, the reactions were never a risk to my life (that I know of). However, I did think the codeine was going to kill me at the time. It was not a pretty sight.

So anything I can do to help out.

I am posting the link the Stevens Johnson Syndrome Foundation here.

I will also pass it along to some of my other friends outside of the 43things world.

Yay! 6 years ago

I printed off the Fact Sheet on Stevens Johnson Syndrome and have sent it to the members of my amateur press associations. That’s more than 43 people, but they aren’t on 43 Things. I’ve received 37 cheers for this goal, so when I receive 6 more I’ll mark it done. 6 years ago

I’ve only sent 21 people the link, but I’ve had the goal sitting here a long time with the links in my other entry (also at the bottom if you want to take a look…) and I think a fair number of people will have seen it and been curious enough to look.

Thanks again reverieincapri for the invitation to join. x

SJS foundationwiki SJS page6 years ago

my SJS reaction

...setting the pill on the counter, I opened the bottle of cream my doctor had prescribed for me. For the past two weeks, my excruciating headaches and body pain were relentless.It had been so long since i had felt well, I was wondering if i would ever be that way again. Spending most of my time in bed, I had begged for help the best I knew how..I could barely get enough energy to talk on the phone, could not eat, and my mind was in a fog.
I called many pharmacists and my doctor telling them “something is wrong”… “you must just stay out of the sun while taking this medication,these symptoms shall pass”, they replied. Each day the symptoms changed, intensified, and I became more ill. They did not know of my severe photophobia. I could not leave my bedroom. I had not the energy to drive myself to the doctor.

Then came the day that I burned.

The doctor had thought to biopsy my face , perhaps it could be something we are not familiar with, perhaps we should rule out skin cancer, he advised. I was terrified to have my face cut, and asked if there was anything else we could try. It had been 6 months of creams and medications..
I may take a systemic antibiotic for 14 days and on the last day add a cream to the regimen.
It was the last day. I remember getting out of bed, walking to the kitchen , and setting the pill on the counter. I opened the jar of cream and took a pinsize amount on my finger. I dabbed the cream next to my mouth on my cheek. Within seconds, my eyes swelled immensely and turned purple, and the corners cracked open, draining with conjunctivitis. My entire face burned. The surface raised an inch thick charred black up to the hairline. It burned inside my nose, also cracking on its outer edges. My lips swelled, peeling the outer layer off and split open, the inside of my mouth blistering.
My daughter, 7 years old at the time, appeared in the room. I remember seeing her face, but I do not remember talking to her. (We were home alone for the weekend.)At one point, I doused my face into the water in the sink. All at once,my entire outer black charred surface of my face sloughed off in a sheet into the water. I felt like I was in an inferno..it was difficult to breathe and I was exhausted.I crawled over to the phone and called my girlfriend ,Sarah, who once worked in the medical field, telling her I got a burn. I told her I would call her back. I hung up the phone,never telling her the extent of what happened and slumped to the floor. I do not know how long I remained on there. My mind was a total blank.

..at the time, I didn’t know that this was only the beginning. 6 years ago

LOB, you gave me the best surprise! I was reading through you list of 43things and as I scrolled down, at the end I saw your 40th goal! Thank you so much :
Xenny wants to bring Rat_Bastard back,
tinydancer24,
Londonderry
and lob
for helping me! 6 years ago

...the photo you see of me, the photo recently taken,is not me.
..yes, it is the face and the smile you greet but
I am more than just what you see.
..for in seconds, the “me” that I knew,the one who had been my intimate friend, disappeared… 6 years ago

Thanks reverieincapri for inviting me to this team. I know a bit about the condition and have met one person suffering from the drug-induced form. It’s not something many people will have heard of I don’t think. I’m assuming you have personal reasons for this goal, but I think it’s always important to increase awareness of less well publicised illnesses. I’ll read your story when you post it. x

SJS foundationwiki SJS page6 years ago

To potentially save a life of a loved one, you may read the FACT SHEET on the Stevens Johnson Syndrome Foundation website… 6 years ago