1. Stevens Johnson syndrome foundation -the official site
  2. SJS foundation -Stevens Johnson syndrome discussion
  3. SJS/TEN bereavement group
  4. SJS kids support
  5. Support group for Stevens Johnson syndrome and toxic epidermal necrolysis
  6. This group is for the discussion of dry eye and cornea conditions as a result of medical conditions
  7. SJS support group of Holland (dutch)
  8. Italian Stevens Johnson syndrome support group (italiano)
  9. Swedish EM/SJS/TEN support group (svenska)
  10. Avimedi -association of victims of medicines (francais, italiano, english, espanol, portugues, deutsch)
  11. SJS blog
  12. Book on Stevens-Johnson syndrome
  13. SJS awareness free download

      


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The most common and serious long-term sequelae of Stevens-Johnson syndrome and TEN are the ocular complications.

If an amniotic membrane graft can be placed into the eye during the first 3-4 days of SJS/TEN most of the eye issues can be avoided.

Eye care is of utmost importance in this disease!! 
Consult your eye doctor early so they can detect any changes that may occur.

  | AMT dressing -video | sore or dry eyes | Dr. Scheffer Tseng´s website

 

 

Erythema multiforme (EM) is a medical term for skin eruptions. Doctors/medical experts like to use this term if the skin problem is localized, i.e. limited to small patches on the body.

 

Stevens-Johnson syndrome (SJS) and "toxic epidermal necrolysis"  (TEN, Lyell´s syndrome) are two variants of the same condition- a skin exfoliating adverse drug reaction that causes blisters on both the outside, and inside of the body.  Two doctors, Dr Stevens and Dr Johnson, identified this adverse drug reaction in the 1920's, and the words "toxic epidermal necrolysis" loosely translated mean "poisonous killing of skin".

 

Stevens Johnson Syndrome and Toxic Epidermal Necrolysis are insidious, potentially deadly variants of the same disease in which the human body fools itself into thinking the skin, mucous membranes, and visceral organs are foreign invaders; so the body literally attempts to rid itself of the skin and internal organs.

 

Almost all surfaces which blister and peel will heal pretty well, except for the ocular surface and the internal organs that were blistered.  If there's even one tiny pinprick blister on the cornea, it will leave life-long, life altering consequences. It can, and often does get worse, in many cases requiring corrective surgery.

 

There's a growing body of evidence that if SJS is correctly diagnosed in the early stages and medically treated correctly, it will not get to the blistering and life-threatening stage.

 

SJS/TEN is essentially drug-induced. A few cases are related to infectious agents as mycoplasma pneumoniae, or other viruses and bacteria. Some cases remain unexplained.

 

SJS/TEN after-effects can include:
painful eyes, dry eye syndrome, photophobia, ingrowing eyelashes, 

corneal ulcers,
lid/corneal scarring, symblepharon, blindness, liver damage, lung damage, asthma/allergy, runny nose, joint pain, loss of nails or hair, 
sun sensitivity,
depression, chronic fatigue syndrome....