Stevens-Johnson Syndrome. Plz help me.

In 2009 i suffered from Stevens-Johnson Syndrome or Toxic Epidermal Necrolysis(SJS /TEN) which was caused by Phenytoin. It burnt my skin, damaged my blood vessels and tissues. After coming out of the hospital I visited many doctors to heal my skin of the burnt marks but they couldn't provide me much help as it's a very rare condition and most of the doctors have no knowledge of how to deal with it. they gave me those hydroquinone, tretinoin n steroid combo creams to lighten what they called post-inflammatory hyperpigmentation. my skin was already in a fragile condition n it made it worse n i got burnt again from tretinoin( i was using triglow cream then). i contacted some SJS survivors on Facebook n none of them used those creams. instead they used vit e oil or any other oil having vit e in it n their skin healed completely in 2-3 years. and here I'm wearing full sleeve fully covered clothes even after 8 years to hide my blotchy, raw, inflamed n printed skin. plz help me.