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

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)

We Have a Challenge!

Hi all,

Similar to the popular ALS Ice Bucket Challenge that's been everywhere for the last few months, CVID and Primary Immune (PI) patients now have a challenge. Ours is called Pie for PI. If you want to participate, please make a video of yourself getting a pie in the face and challenge others to participate within 24 hours. Please be sure to mention in your video (or in comments) that donations can be made to the Immune Deficiency Foundation (IDF) or the Jeffrey Modell Foundation. For more information on the challenge, please visit the Facebook page: https://www.facebook.com/PieforPI

Thanks for spreading awareness!

New CVID Awareness Website and YouTube Video

A friend with CVID has been feeling inspired to spread CVID awareness, and for that reason has recently created the website, cvidawareness.org. The website is still being created but is available right now and already very informative. It will be a huge asset in educating people about CVID and Primary Immune Diseases. Please visit the website and learn all you can for yourself or your loved ones with Primary Immune Diseases.

In addition, he made a YouTube video that shows him creating the website. Please check it out!

New US Patent Granted for Immune System Gene Sequencing Method

There seems to be a lot of breakthroughs in the medical industry related to the immune system lately, and I'm so excited to hear about them! In fact, a recent article titled Adaptive Bio receives US patent for next generation immunosequencing field in Pharmabiz.com (an online pharmaceutical journal in India)  stated the following:

"Adaptive Biotechnologies Corporation...has obtained a notice of allowance in US Patent Application Serial No. 12/794,507, titled “Method of Measuring Adaptive Immunity""

Adaptive Biotechnologies has apparently come up with a new way of sequencing the adaptive immune system (Killer T Cells and B Cells) to aid in a range of applications related to immune system dysfunction. This technology will help the medical industry make advancements in the monitoring and treatment of cancer and other immune (and auto-immune) diseases.

Recent Study Discovered a New Gene Associated with Causing CVID!

Today I received notice of a new article on CVID and the information is pretty exciting! In Utah a mother with two children (all of whom have CVID) enrolled in a genetic study for CVID and the researchers discovered another gene mutation associated with causing CVID. In addition to testing the mother and her two children they also found another person (out of 35 tested) who also had the gene mutation. They don't know whether it was a mutation that all four of these people were born with or whether the gene mutated due to some other cause.

The article, from The Science Codex, titled "Mutation in NFKB2 gene causes hard-to-diagnose immunodeficiency disorder CVID" states: 

"NFKB2 gene impairs a protein from functioning properly, which interferes with the body's ability to make antibodies and fight infection."

The article also stated that there's a new test developed by ARUP Laboratories that involves testing for this gene mutation that will be available in May of 2014. The new test will help doctors diagnose CVID. I hope that this new test will help CVID patients who are borderline in terms of antibody numbers get a more definite diagnosis that will ensure insurance will authorize treatment for them. No more of this "We won't cover because your numbers are borderline and your doctor didn't test your pneumonia titers to see if you built antibodies". Wouldn't that be wonderful? Too many of my friends in my CVID support group have had to wrestle with insurance companies to get treatment because their doctors weren't knowledgeable enough to follow a diagnostic criteria that insurance companies would honor. I'm blessed in that regard, despite the fact that I am not currently getting IVIG treatments.

This is so exciting because it means that there is more research being done to find out the cause of CVID and they are making discoveries that could one day lead to a cure! I expect that somehow I may have interacted with the woman in this study. There are few enough of us in the United States that it's not that unreasonable an assumption. If so, or if you are reading this, thank you for getting involved to help get us some answers! :)

FDA Warning: Tygacil (tigecycline): Drug Safety Communication - Increased Risk of Death!!

I received this warning via email today and felt obliged to pass it on. I've never heard of Tygacil, but it is an IV drug used to treat complicated skin and skin structure infections (cSSSI), complicated intra-abdominal infections (cIAI)*, and community-acquired bacterial pneumonia (CABP), so I think this is an appropriate venue to share it.

"FDA notified health professionals and their medical care organizations of a new Boxed Warning describing an increased risk of death when intravenous Tygacil is used for FDA-approved uses as well as for non-approved uses." (from Drugs.com -- Tygacil (tigecycline): Drug Safety Communication - Increased Risk of Death)

The increased risk of death is only 0.7% compared to other antibiotics, but is still significant enough to be added to package warnings, and I expect most people would prefer to have this drug used when there are no other options left.

Be well my friends!

*Refer to the "Introduction" section of this article to get a better understanding of cIAI (from the World Journal of Emergency Surgery)