It was a cold, rainy, foggy day when we left San Francisco this past February at the end of the shoot for Nicky’s documentary. We arrived home just before midnight, exhausted but happy. Nicky then slept for over 12 hours, as he often does.
I was contacted by Barcroft TV Productions last fall after Kate, a producer, came across my book “Butterfly Child” where I wrote about Nicky’s life with Epidermolysis Bullosa. She wanted to know if Nicky might be interested in telling his story for this show.
Nicky is always VERY open for awareness, he wants a cure, and he’s not, and never has been modest about taking photos of his wounds etcetera. I know many patients are, well, he’s not. Needless to say he agreed.
For this TV show, not only they wanted to show EB per se, but they were interested in showing how this condition was being treated, or if there was a cure etc., that’s why we combined the filming with our trip to Stanford for the trial. This trip was also a combined appointment for the cream trial and with skin biopsy & blood work to see if the skin grafts he received 2 years ago were still “there”, so to speak. Nicky had genetically modified skin grafts (modified to have the collagen type VII he’s not producing) put on his forearms back then. Unfortunately he had antibodies for the Collagen we didn’t know about, who started fighting this new protein. Interestingly enough, he still has “some” collagen VII in his skin, which explains why some of the nastier wounds that were in his arms before the skin graft did not come back. His arms are still pretty bad though. The cream has helped.
Hence… in early February two great British ladies, Kate and Faye, came over to film us for 3 days. We bonded immediately, especially with Kate, since she’s a big “Outlander” fan as well. Sassenachs unite!!! 🙂
The first day we did interviews at my house, they wanted to see Nicky getting up & what a normal day looks like. They came back that night to film the bandage change. They were… shocked, to say the least.
The next day we headed to Stanford-a 6 hour drive-and they followed behind us. We stopped to get ice cream and milk for Nicky and they filmed us getting into the hotel. The day after that they filmed us getting ready for our visit, the visit and they interviewed Dr. Tang.
I must say, Faye filmed hours and hours of stuff, and to see the segment was only 5 minutes was strange, but they did an AMAZING job summarizing everything. WOW!!! So… Here it is:
The segment aired in the UK this past week, it’s airing all over the world, my contact gave me airing dates for over 100 countries, but as I write this there is no air-date for the US yet. It will air on the season premiere on the channel “Discovery Life” and after that it will be available on Amazon video as well.
They sent me the whole episode to watch and it was really cute to see the ending credits roll over our visit to the Golden Gate, which is not shown in the clip above. So excited for everyone to see it.
As always, we do this for AWARENESS. That’s it. Sure, I would love to sell a few more books, I would be lying if I didn’t want my story out there as much as possible, but we want a cure most of all. Here’s my favorite EB organizations:
EBMRF: Epidermolysis Bullosa Medical Resource Foundation
EBRP: Epidermolysis Bullosa Resource Partnership
DEBRA International: Dystrophic Epidermolysis Bullosa Research Association
Love & Light,