It’s been a while since we have had any direct contact from a physician regarding Mermaid’s nevus so our updates regarding progress have been slim, but we have something exciting to share!
Last week I received a bit of a cryptic message from our contact @ Yale University. “Hello, I need to talk to you about the study, I am leaving for the day, can you call me tomorrow, early would be best.” Now immediately my mind goes to all the wrong places. They found something bad, I messed up a specimen, I didn’t sign something, maybe they want me to take their info off my website… how could this be, we submitted everything last summer. It has to be bad. It just has too. it was pure torture waiting the 17 hours I did before reaching someone.
I talked to my Mom the entire drive to work the following morning. She reminded me to be positive and we veered into other conversations taking my mind off the call I was going to place immediately entering my office. Which is EXACTLY what I did. I purposely arrived early – knowing they are 3 hours ahead of me, dropped my bags on the floor, located my yellow sticky with the phone number and dialed.
As Dr. Chaote’s doll of an assistant pilfered through her emails to find just what she was calling about, I patiently waited. Just having her on the phone was relief enough. The suspense was killing me.
Remember, the study was conducted on the East Coast, we are on the West Coast. Until Dr. Chaote was involved there was never even a mention of having a biopsy done. When we finally had it done the results were forwarded to him via paper form but the physical biopsy has been housed here with our healthcare entity.
The information was vague but here’s the low down. Something on the biopsy result “popped out” to the physicians. They decided that they wanted to physically obtain Mermaid’s specimen and run further tests on it. What exactly caught their attention is beyond me but his assistant told me that this is GOOD news. When they see something of interest it typically means they are closer to identifying something more specific, which means more specific treatment, or leads them to further research for us to be involved in.
My “assumption” and again I say ASSUMPTION; is that the rare subtype of Edpidermolyctic Hyperkeratosis may have sparked some interest. Where I know nothing for sure I will be waiting impatiently to see where this leads us!
Glad to still be connected with the Yale team!
Stay tuned for updates!
Thanks for walking with us today,