Going to the Debra.org PCC is always a treat.
The first Conference I attended with Nicky was the one held in Los Angeles in 1999. It seems like forever ago. Nicky was 2.5 years old and by then I had many “online” friends which I had the absolute pleasure to meet in person. Back then, without Facebook or even MySpace, the only way to find someone who was dealing with the same rare disorder was through mailing lists or message boards. That seems so antiquated right now! Still… those first parents that I met remain in my close circle of friends who I love because we “get” each other as we’ve been through this roller coaster together all these years.
My sons Nicky & Connor at the PCC with me, July 2018
The following Conference I attended was the one in Palo Alto (CA) in 2004, followed by the one in 2012 in Orlando (FL). They have conferences every 2 years, why did I wait 8 years to go to one again? There were a couple of reasons…
For one, I could not afford to go to one. Every 2 years the location changes and while attending the conference is free and the hotel is discounted for EB families, paying for the flight was still something I could not find the money for.
For two… and this is even more depressing, at the 2004 conference we were told that research to find a cure was at a standstill. I was heartbroken at that point. Nicky had started going to camp, so the “social” aspect was taken care of with that, and just to hear the loom and gloom again about there not being anything happening in curing EB was not a priority for me. I needed to stay positive. I slowly started to distance myself from the EB community at large with the exception of certain moms and camp moms. There were always children dying, it was too hard for me. The reality of EB is horrible. I needed to take care of myself mentally.
By 2012, however, not only Nicky’s dad offered to pay for my trip, but there had been finally many advances made in research and wound care. So much so that I looked forward to go, so, I went. It was amazing to see old friends and make new ones, having inspiring talks with adults with EB and play with the kiddos. I also was able to see new products for wound care that have changed Nicky’s life. I will always be thankful for that trip.
Last year, when it was announced that the Conference in 2018 was going to be in Phoenix I was thrilled beyond words. “I can go!!!”. I was able to take Nicky as well to this one, simply because to us was only a 6 hour drive, Nicky is used to those since that’s how long it takes us to go to Stanford. He spent the whole time of the conference playing with his EB friends while I attended lectures.
In a nutshell, here’s the most important takeaways from the conference this year as per the sessions I attended.
- Nicky’s bent wrists are not a problem.
- I need to get Connor tested to see if he’s a carrier.
- All new EB trials are listed at https://clinicaltrials.gov/ct2/results?cond=Epidermolysis+Bullosa&term=&cntry=&state=&city=&dist= (I think I knew this before)
- There are actual stages of puberty! Duh. I felt so dumb. I checked it out and Nicky is on stage 2. I wouldn’t be upset if he never reached stage 5. Neither would he!
- Since it’s hard to clean the teeth with RDEB, use Xylitol gum, spray, toothpaste, mouthspray, candy etc. Xylitol tastes like sugar and several studies suggest that it can improve dental health and have various other important benefits.
- Use toothpaste without Sodium Lauryl Sulfate (SLS) which is a chemical used in toothpaste to create the foaming action. SLS can cause or irritate existing allergies, canker sores and of course mouth sores for those with EB.
- Use Pr0-Biora Plus Products or any Probiotic products which corrects the balance of bacteria in the mouth.
- Use SulcaBrush picks for flossing. (There were many more tips from the Dentist that spoke, hopefully they will upload the video of his talk!!!)
- Coming up this fall… Debra will need our help to get word about about the “EB Care Act” and various US. States “EB resolutions” to help EB patients. The Act will be worded so insurance companies/medicare will be forced to cover products needed by EB patients.
- Follow as Debra is getting involved with https://everylifefoundation.org/ & http://rareadvocates.org/
- Important Clinical Guidelines with amazing info: http://www.debra-international.org/clinical-guidelines.html
- Lastly but most importantly… there are 3 major clinical trials right now that involve healing localized wounds. As the trials progress their ultimate goal is to be able to infuse the patient via IV to provide a cure for the entire body. Most of these are temporary, but I think most would agree that our children would be more than happy to have an infusion every 3/6/9 months or however often to get rid of only half of their pain, let alone all of it. All of this info and research is priceless.
I am hoping that Debra will upload the videos of many of the sessions, as some were priceless and I just could not take notes fast enough!!!
At this point I am not sure if we’ll attend the next conference in 2020, it will depend where it is. There was talk about Denver, and if that’s where it will be, Nicky is willing to go there if I drive. We shall see.
A big hug to all who are dealing with EB.
Love & Light,
