Sharing is Caring

I am waxing a little philosophical today because it is just after my 8th anniversary of diagnosis and IVIG treatment beginning. My oh my how the world has changed since then.

I can remember googling about immunoglobulins after I was first told I was low in all the types. I really didn't feel like I had leukemia, but that was pretty much the only thing I could find other than medical articles I didn't really understand. Then the doctor told me the terms "hypogammaglobulinema"and "Common Variable Immune Deficiency" and my life changed. Still not much came up on my google searches, but I had a much more specific set of terms to wrap my mind around. Social media was still in its infant stages when I was diagnosed, so I really felt like I was a freak of nature because I was convinced that everything was on the internet.

I was wrong.

Now, when you seek information about primary immune deficiencies, you find the website of the Immune Deficiency Foundation, along with some medical websites, like those from the Mayo clinic. It wasn't until 2008, on an additional search, that I found the IDF and found that there were more people like me. I was flabbergasted at the community and information available. I was ready to take ownership of my disease and was finally able to access the information to do so.

Fast forward to this past weekend. I got a tweet from someone who'd seen an exchange I had with @QueenofSpain about IVIG. I was giving her tips on mitigating side effects, etc, as she has started high dose IVIG therapy for her lupus. The woman who tweeted me somehow found her needle in the haystack. She'd been looking for a real, live person who could talk to her about PIDDs. This, kids, is why I write this blog (even if no one reads it), why I help administer a group on Facebook, and why I tweet openly about my disease. My experience can actually help other people. It's an amazing feeling that I'm able to make people feel far less isolated than I did.

It's been an amazing journey for me to get to this point, and I am hopeful that there will be a continued growth in our online community and continued sharing of information so that we become a more empowered patient group. That's my end goal, really, so we can all get the best care possible. Maybe, someday, there will even be better and more treatment options. A girl can dream.