In January 2007 it became clear that his eyes would never be as they had been before SJS. Thanks to some crises during 2006 he had started a cure with Dexamethason, a cortic steroid. Nevertheless, his eyes deteriorated. His skin didn’t heal. His nails grew dangerously. We started looking at alternative methods, without specialists laughing at symptoms (they all did, except dr. Zaal in VUmc, the eye physician).
After an experiment with scleral lenses, contact lenses that are so big they can contain fluid to moisten the cornea, that went wrong because of the fact the lenses seemed to trigger Max’ conjunctiva to elevated activity. Thus encouraging the vascularization that cost him part of the vision left. Please note: SJS leaves a patient with superficial problems, on all surfaces of the body. In other words: his eyes are fine, it’s the light that just won’t pass through the cornea. Meanwhile our health insurance company didn’t ask too much questions. Somehow they, FBTO in Leeuwarden, understood not only the risks but also the seriousness of this case and they made sure Max had and kept access to the best medications.