Tuesday, November 4, 2014

Community Groups

Joining a Community Group
So in the past few weeks I've come across two really amazing FaceBook Group pages that I can share my experiences about dealing with my Evans Syndrome as well my Common Variable Immune Deficiency.

While I knew about the CVID group page I wasn't all for group pages long ago, but after joining some other different types of groups for my other interests. I found just how much fun joining a group can be, now since I'm normally shy when it comes to new people and kind of afraid to spill all my knowledge and experiences with my own conditions and scare the other person away.

But the Evan Syndrome Group page is really something, I have only two other friends that has Evans and we all kind of dealt with similar problems or have completely different events that affects us and also reminds us of that time.

It came a pure accident that I found the Evan's Syndrome page I'd quickly joined because I was curious . . . curious like a cat. From being a part of this group I've realizes a few things . . . BIG THINGS.

One, somehow it was not in the cards for me to have meet my friend Brittany, who I've meet at an IDF conference in 2011. We both had the same exact conditions and yet somehow we never came across each until 2011 and not in 2009 where the previous IDF conference was.

When people on the Evans's group had found an old website that describes Evans, it turns out to be that Brittany's mom and another parent that created that website to help all of us. I even asked my dad and showed him the website and he recogized it without questions. This was the exact same website he found way back when I was younger and he reach out to Katie Addington who sadly had passed away and her mom about Katie's Evans.

I guess it's sort of my fault that I didn't keep in touch with her, I guess I wasn't the type to write letters or something. But Brittany and Katie both met one another and it struck me that maybe if I had stayed in touch somehow, I probably would have met Brittany way longer before 2011. But I can't change that, but it still kind of gives me chills thinking about it.

Two, after having an discussion with my dad, I pointed out that some of these people's story are almost really terrify or really horrible. I said that I am lucky to not have had such a severity to what some people might have or has, but I wonder if my Evans stay at bay because I started IVIG when I was 8/9 years old. But there are so many factors to why not a whole lot of bad things related to Evans never occurred. Or maybe they did but I just don't remember . . .

So with my attempt to use this blog to share not only my CVID but now also my Evans because they both tie in with one another and I really can't wait to share some things that I've gone through and hope that people can gain from it. Brittany is also a part of this blog but we're still trying to work thing out on how to get her an admin on this blog and plus she's a new mom and I know her little boy demands lots of attention.

Community Groups have it's benefits for each and every member, and I hope that our blog can benefit to the readers. Don't be afraid to ask questions, we may not have it all and maybe someone else does or no one, it will not hurt to ask.