By Kelly Clardy
There are an estimated 1.5 million people in the U.S. with lupus. Thousands of walkers participate in nearly 70 cities across the nation to raise funds annually. In my state, there are more than 18 lupus support groups. A smaller number, 360,000 people in the U.S., are estimated to have brain tumors. In 2011, there will be at least 15 walks across the country benefiting brain tumor research, and in my city, there are at least three support groups. Very little needs to be said about breast cancer. We all instantly recognize their pink ribbons.
What do these illnesses have in common? People have heard of them. What is different about my primary immune deficiency disease (PIDD)? Most of the people I meet have never heard of it. So while the patients with breast cancer, lupus and brain tumors can drop the names of their diagnoses and their audience immediately “gets it,” I am in for a long explanation. Any discussion of my diagnosis and treatment is responded to with blank stares and glazed-over eyes. The best tool in my explanatory arsenal is the “boy in the bubble” story, and even that doesn’t always help.
Obviously, none of these other diseases are something you’d want; I certainly hope to never be diagnosed with one. And yet I have a big ’ol case of what I call “disease envy.” Let me explain.
I am green with envy for the recognition these diseases receive. From large fundraising walks across the country and local support group that are easily located online, to disease names that need no explanation, it all sounds pretty good to me. As a PIDD patient, I say “Sign me up!”
We know diseases like PIDD that are treated with intravenous immune globulin (IVIG) are rare. It’s no surprise that lack of awareness is an issue, even within our own community. At a recent infusion, I met another PIDD patient who had been receiving IVIG for more than two years. She heard me talking to my nurse about some of my advocacy efforts and immediately perked up her head. “Do you mind if I ask you what you two are discussing?” she asked. It turned out, she had never heard of IG Living magazine or the Immune Deficiency Foundation (IDF). She was certainly not aware of the many Facebook groups and Twitter accounts that revolve around IG topics. So instead of getting some much needed zzz’s during that day’s infusion, or catching up on my fashion magazine reading, I knew I had to take the time to tell her everything I knew. I wasn’t rested when I left the infusion center that day, but one more IG patient was a bit more enlightened about the resources that are available to her. I felt good about that.
Right or wrong, I admit I am jealous of the publicity other better-known diseases generate. It would be nice to be able to say, “I have PIDD” and watch people’s heads nod in recognition or even sympathy. I’m honestly not sure how we get that kind of recognition, but I suppose, ultimately, it’s up to us. Patients with rare diseases, especially those treated by IG, have to be our own advocates. We have to take the time to teach, explain and educate whenever possible —even if it’s just one patient, friend, co-worker, family member or physician at a time.