My take-away from the Debra’s PCC in Orlando – Part 1

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I promised a few friends who could not make the conference, that I would take ‘good notes’ about products, talks and progress in the treatments for EBers from this event, so I will try to be as descriptive as I can, noting that a lot of the lingo is way beyond my level of comprehension, ha ha.

The last conference I attended was the one in Palo Alto in 2004. I don’t know if it was because Connor was little and so needy (I missed a few of the talks) or because the talk I was fervently awaiting for turned out to be so disappointing… the only research for treatment for EB at the time was not moving forward… it took 8 years for me to attend another conference again. Granted, I was broke and the conferences where nowhere near California, but I felt as if I did not know what else I could possibly learn that I did not already know. It’s not that I felt I was a know-it-all, but as a mom, I pride myself in keeping informed. It wasn’t until about 18 months ago, when I received the DVDs from National Rehab about the talks at the conference in Cincinnati that I felt as though I was missing out on crucial info that was simply not available anymore from my various sources. There was a ton of research going on I had no idea of, and there were products which helped EB patients immensely I never knew existed, and the only venue to get this information full front was GOING to the next conference. A big THANK YOU to Nicky’s dad who paid for the trip, without his support I would have never made it.

So… here goes. The first day was basically the registration, welcome, and then a couple of talks. I spent my morning with Laurie Sterner and her husband from the Butterfly Fund (very special people to say the absolute least) and met with Christie Zink (who is taking over the Wound Care Bill from me because she has more connections etc, bless her heart!), Patrice Williams (Jonah’s mom, we both sadly had babies that were stillborn before having our EB babies) and mingled with various others. At the registration little Zacky Johnson came over to me and told me he saw an EB kid that looked ‘just like Nicky’! I asked him to take me to him and to my amazement… there he was, little Stephen, fan and all. Same smile too! Amazing. There were so many moms there that I had not seen in at least 8 years, some I had never met, it was truly wonderful.

Ok, bla bla, let’s get to the talks.

Brett Kopelan, Debra’s executive director, started off the conference with the welcoming statements. He stated that the Debra website would get a big new revamp and that the presentation videos from the conference would be available when the new website gets launched. He also announced if anyone wanted to talk about their experience with EB they would have the ‘Debra Diaries’ room.

Here’s the Video of it, courtesy of Debra

The talk about the Camps explained the rules and regulations of the various camps. There are two summer camps and two winter camps. It was given by  Kaycie Artus and Danielle Malchano from National Rehab.

Summer Camps: Camp Discovery and Camp Wonder.
Camp Discovery is run by the American Academy of Dermatology, it has 6 camps around the US: Camp Reflection in Washington (ages 8-16), Camp Dermadillo in Texas (ages 9-15), Camp Liberty in Connecticut (ages 8-16), Camp Horizon in Pennsylvania (ages8-13) and 2 in Minnesota, Camp Little Pine (ages 10-14) and Camp Big Trout (Ages 14-16). Ages vary by the camp, but it’s no younger than 8 and no older than 16 overall. It’s FREE for campers, including airfare, BUT Parents do not accompany campers. A full medical staff well knowledged about EB performs the dressing changes.
Camp Wonder is run by the Children Skin Disease Foundation, it’s in Livermore, California, and the ages are 7-16. It’s FREE for campers, including airfare, and parents may accompany campers and do dressing changes.

Winter Camps: Camp Spirit and EB Survivor Camp.
Camp Spirit is run by Children Hospital Colorado and it’s in Winter Park, Colorado. The ages are 8-18 and for RDEB only.   It’s FREE for campers, including airfare, BUT Parents do not accompany campers. A full medical staff well knowledged about EB performs the dressing changes.
EB Survivor Camp is run by USeb (United Survivor with Epidermolysis Bullosa)  , it’s in Park City, Utah. ALL ages are accepted! Covered costs include lodging, food and ski lessons, assistance is available for airfare. Caregivers MUST attend with campers, there is NO Medical Staff.

In my notes I wrote that Camp Spirit will meet campers at the gate at the Denver airport and they do skiing, dogsled, snowmobile and campers go back home stating it was a ‘life changing experience’.

Here is the video of this presentation, courtesy of Debra of America:

Stem Cell Transplantation for severe EB

Dr. Wagner from the University of Minnesota went through the Transplants on EB patient he has been doing, explaining in detail the three phases of the transplants they’ve done. Phase 1 was Bone Marrow only, Phase 2 was with Marrow + Mesenchial cells, and phase 3 was with reduced intensity, less Busolfan medication, plus radiation instead. He had many slides which showed the improvements and the lack of them depending on the phases and that they have a long ways to go. He chocked up at one point describing his feelings and stated quite clearly how difficult it all is and quoted  a famous quote that states ‘Difficult things you can do every day, impossible things may take a little longer’. The problem with EB is that patients come in very sick already, some with Sepsis and he stressed how he would only suggest trying this with very severe forms of EB due to the risk.
I did not take photos of his slides, save for one, nor took any further notes. Transplants for Nicky would be too risky the way they are done now. Dr. Wagner told me himself it’s going to take many years to perfect it and make it safer. I applaud his dedication to our cause.

The reception followed Dr. Wagner where everyone mingled. I was so happy to see everyone!

Here is the video of Dr. Wagner’s presentation, courtesy of Debra of America:

GO TO PART 2 —>>>

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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