Searching for My Molecular Diagnosis - Round 3

The long dramatic saga of trying to find what genetic flaw is causing Ehlers-Danlos Syndrome in me, told in five parts. This is Round 3. Need to catch up? Start here. Enjoy.

Round 3

March 2015

Ordering Hospital: UCLA

DNA Study: thorough examination of Tenascin X region

Returning to the Children's Hospital at UCLA to find out the results of my TNXB study done by Prevention Genetics, I am thinking this is a social call, that I will not be getting a cause found. Just a feeling. 

Trying to enjoy the visit and not cry.

Genetic Department is in Pediatrics. 

Genetic Department is in Pediatrics. 



No surprise, really. It is rarely found as a cause. The geneticist admired my persistence. He sincerely wished me luck. It was a good moment. A very smart, very educated person who has better things to do did all he could for me. I cannot ask for more than that. Can I?

December 2015

In Thailand, on Christmas Eve, I asked the Thai man dressed up as Santa, at our resort filled mostly with Asian and Eastern European tourists, for my Christmas wish. He was probably a Buddhist and has no idea who Santa is. I asked him anyway. 

I would like my molecular diagnosis.

Then I surprised myself by crying.

X-mas Eve in Phucket, Thailand.

X-mas Eve in Phucket, Thailand.

I don’t think he understood English. It doesn’t matter. He was Santa. At least for that hot, humid night in Southeast Asia, he was Santa.