Hello Great PXE Family,
I am Denise Bobes, 35 years old, living and representing PXE Office in Romania. I am mother of two great sons - 12 and almost 9. I did not know of the existence of PXE until a lady dermatologist diagnosed my 12 year old son (at the time of diagnose he was 8) with this affliction. My younger son shows no signs of PXE at this time and I hope he will never do.
I am not sure I am affected by PXE, in spite of the fact that another dermatologist told me that I would be, but I am sure that my son unfortunately is. And I know it since I accidentally discovered due to the internet this oasis called PXE International. His skin aspect is exactly as described in your literature. He has no other symptoms so far. I do not know if other family members (my or my husband's) had this disorder.
What about Romanian PXE? My opinion is that very few people here know about this disorder. What I do, I always give a MemberGram and brochures received from PXE International to the lady dermatologist that first diagnosed my son and to the ophthalmologist that we visit.. But I know I will not be able to help others, until I succeed to explain this disorder to my son. This is my huge hurdle. He knows just that he has some spots on his neck that will not disappear. I think time has come.
Success to PXE International Team - they need it for us!