Marfan syndrome is a rare multi-systemic genetic disorder that affects the connective tissue. Those with the condition tend to be tall and thin, with long arms, legs, fingers, and toes. They also typically have overly-flexible joints and scoliosis. Bob Brier, Egyptologist, thought that perhaps this was the solution to the mystery of the appearance of Akhenaten: perhaps the pharaoh simply had the Marfan syndrome and, instead of worrying about his oddity (as many would do) decided that it was a sign that he had been chosen.
I think the answer is a psychological one. But how do you confirm a psychological theory about someone who has been dead for 3,000 years? I thought that if I talked to people with Marfan’s syndrome I might see how it affected their lives. How did they feel growing up different? Did they feel left out? Were they shunned?
A geneticist colleague working on Marfan’s syndrome suggested I talk to a New York chapter of people with the syndrome. I called the organizer of the group, Julie Kurnitz, to see if I could attend their meeting and try out my theory on them. I would give a brief slide lecture about Akhenaten and ask for the group’s reactions.
Most of the people who attended the meeting were women, many would blend in with any crowd; their physical characteristics were not extreme. But some could have been sisters of Akhenaten. Julie has classic Marfan features; she is tall with an elongated chin, narrow eyes, long thin arms, fingers, and toes, unusual features but not freakish. If anything, Julie is a handsome woman. Even before talking with the group, I revised my view of Akhenaten: he wasn’t a freak. You can look different without looking freakish. None of the women in the group had physical features that were shocking.
Julie introduced me to the group and I began talking about Akhenaten and showing slides. After the second slide, I began to hear a lot of “Yups,” and “Wows.” As I continued with slides of the elongated hands and feet of the royal family, there were even more exclamations—”Marfan toes!” They had found a kinsman from ancient Egypt.
After my talk I asked if any of the women had been treated differently when they were growing up, felt left out, had been shunned. And if so, how they had reacted. One woman said that as a child she was always told to stand in the back to hide her long hands when a family photo was taken. Another young woman with close-cut hair and wire-rimmed glasses told a similar story and then provided the insight I was looking for. She said she rebelled and did everything she could to accentuate her appearance, wore capes and strange clothing and bizarre makeup. Who knows what she would have done had she been king of Egypt.
Reading this has given me quite jump. You see the girl on the right? I was once in love with a girl who looked just like that!
Bob Brier, The Murder of Tutankhamun