Thursday, December 23, 2010

Stevens-Johnson Syndrome

It has been almost three years now since my oldest son Aaron developed Stevens-Johnson Syndrome and its more insidious form called TENS. The syndrome manifests from an allergic reaction to over-the-counter or prescription drugs and is deadly and has life long consequences for those that survive.
Early diagnosis of Stevens-Johnson Syndrome (SJS) is the key to survival of this hideous condition. Because it is rare (or so they say) very few health care providers are aware that it exists and many people afflicted die going undiagnosed.

I am taking a few minutes here to post this public service announcement to advocate for better education in the health care profession for SJS awareness. I am also advocating for personal awareness. If you or a loved one develops any kind of a rash that involves blistering, especially around the area of the lips, mouth, and throat, please, please, please seek medical attention immediately and raise the issue of SJS with your Doctor and ask them to do an Internet search for information about it and then follow up with it on your own and find another Doctor if the Doctor you are seeing does not.
Many of you long time readers of Life At Home will remember Aaron's battle with SJS. For new readers or any one coming here for information I refer you to my side bar categories list where if you scroll down you will find a category labeled Stevens-Johnson Syndrome. There are 49 entries in the category so I would suggest you scroll to the beginning to read through the progression of Aaron's case.
There is not much technical information in the blog posts, they are mostly a Mother's heart being poured out for support while going through the ordeal of a sick child.

For more technical information about SJS for any one afflicted with it, or that has a loved one experiencing it, I would direct you to the SJS website but I issue this warning that it is not a pleasant subject to delve into right before Christmas and the pictures shown there are beyond (though accurate) graphic and horrifying so enter the area with pictures with caution.

Links are provided on the SJS website for those interested in donating to raise awareness. Aaron and I thank you in advance for anything you can give.

2 comments:

  1. I didn't know this story about your son. I am so glad he is recovered, and I wish him, and you, a wonderful New Year full of the joy of living.

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  2. Interesting post and thank you for sharing. God Bless.

    Sevens-Johnson Syndrome

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Hugs,
Sue