Saturday, July 8, 2017

Some Thoughts About Stigmas

What do mental illness and Primary Immune deficiencies have in common? They are both stigmatized due to fear and misinformation. In the case of Primary Immune Diseases such as CVID, they are conditions that many are born with where part of the immune system didn't develop properly; while others are born with just a genetic predisposition for it then some event (e.g.: pregnancy, environment, trauma) triggers the immune system to fail later in life. What we do know is that it is not acquired through lifestyle choices or promiscuity, and it is NOT contagious!

Some of us can be treated with infusions of antibodies derived from plasma donations, but others (like me) aren't so lucky. Nevertheless, there is currently no cure, and the plasma infusions can be tortuous. Primary Immune Diseases significantly increase the likelihood of developing certain kinds of cancer and many autoimmune diseases (e.g. rheumatoid arthritis, Chrohn's disease, ulcerative colitis, sjogren's disease, etc).

So before you get irritated that a friend with CVID has to cancel an outing with you AGAIN, or say unkind things like "she must have some unconfessed sin keeping her sick", or think "why can't I come over, it's just a cold?" take a moment to educate yourself about this condition. Think about what it's like being sick ALL the time, and how much you hate just having a cold...something that causes a cold or rash to you could cause pneumonia or another life-threatening condition to us. Those of us who can't have infusions are like a soldier walking into a battlefield without weapons or any defense...our best option to protect ourselves is to avoid exposure.

Oh, and another thing that mental illness and Primary Immune Diseases have in common is that dealing with judgment from friends and family, dealing with a medical system that's inadequate to help people with rare diseases, and being called irresponsible or lazy because of our illness causes massive amounts of anxiety and depression.

To all of my loved-ones who have stuck by me through thick and thin, thank you with all my heart. Your compassion and understanding help give me the strength to keep fighting.

For more information, please visit: Primaryimmune.org or cvidawareness.org

Tuesday, June 27, 2017

The Big Sick -- A New Movie Raising Awareness

I'm hearing good things about this movie. The writer, Emily V. Gordon announced back in February that she has CVID, and this romantic comedy (The Big Sick) is partially inspired by her experiences with having it. The movie is  scheduled to be released nationwide July 14, but is currently available in select cities and the reviews are good. What a great way to raise awareness!

Click here to watch the official trailer (on YouTube)