I was diagnosed in July 2015 with a Primary Immunodeficiency (PID) called Common Variable Immunodeficiency (CVID) (we’re all about the acronyms here), and I did what any 27 year old would do and jumped on to Google.
It was terrifying.
Both because of the super medical sites full of intimidating jargon, and the personal blogs by people who were incredibly ill who I didn’t relate to.
I feel personally very lucky to have been diagnosed at a relatively young age (considering the average of diagnosis is between 30 – 40 years old), which meant that I have less permanent organ damage from repeated infections and I do not have an autoimmune disease (yet?).
From what I’ve read, and learned from people I’ve met online since, there are many people with CVID who cannot work, and who suffer from things like extreme fatigue, joint pain, a range of autoimmune diseases and other serious ongoing medical issues. But there is a huge spectrum of people with the same thing who may not relate to those issues.
The reason that I want to blog is that I hope that there are people out there like I was, who are just getting diagnosed, and maybe see this. And I want to say hi, and you’re not alone ❤️
So, what is Common Variable Immunodeficiency?
I’ve put together what I feel like the main points of what CVID is, from what I understand:
- CVID is a Primary Immune Deficiency in which the immune system hasn’t developed or matured properly and doesn’t create enough immunoglobulins (better known as antibodies) to keep you healthy.
- Antibodies are required to fight bacterial and viral infections, so people with CVID often have recurrent infections – especially lung, sinus and skin infections, and/or gut issues.
- People with CVID often get sick more easily than others, are sicker for longer, and it takes more to get them better. There’s also a higher risk of hospitalisation from illnesses.
- 20% of people with CVID also get autoimmune diseases which means their immune system starts attacking healthy cells. I honestly think this is rude – that my body could both not fight infections, but also fight the good cells at the same time? Seriously?!
- Even though the name confusingly has the word “Common” in it, it is actually very rare. It is named as such as it’s the most “Common” of the immune deficiencies, and it’s “Variable” as it can vary from patient to patient.
- In NZ, between 1 and 2 people in 50,000 have Primary Immune Deficiencies (I’ve been told there’s probably about 120 people in NZ and 50 in Auckland, where I am). This makes it a rare condition. Because of its rareness, CVID is most commonly diagnosed later in life in people between 30 and 40 years old, although 1 in 5 will have had symptoms in childhood.
- As people with CVID have recurrent infections, there is the risk of organ damage from them not being treated properly. Commonly, people with this immune deficiency will have chronic sinusitis and damage to the lungs, pneumonia is fairly common. There is also a good chance of skin infection, and joint and bowel issues.
I know what you’re thinking. Hot damn, sign me up! Well, this is how you join the club.
How to get diagnosed
If you’ve read the above, done some research, and think you have CVID, the best (and surprisingly easy) way to get diagnosed is by getting a blood test to measure your immunoglobulins and see how your antibody levels are.
It can also be diagnosed with a vaccine test where they take a blood test before and after administering a vaccine to see if your body reacted to the vaccine as it should. If it doesn’t it’d suggest an ill-functioning immune system.
Honestly, surprisingly easy to check considering the late diagnosis age, but many doctors don’t know/think to check for it because we’re rare zebras, not horses, and they’re not used to looking for zebras.
Can CVID be cured?
Unfortunately, CVID is uncurable, but luckily there is treatment to help us improve our quality of life.
My first question after I was diagnosed was “do I need to get treatment for the rest of my life?” and the unfortunate answer was “yes”. It’s not a matter of getting the body back to a good place full of antibodies and it is all fine. It’s a matter of constantly topping up as the body just can’t make enough by itself.
There are a couple of treatment options – Intravenous Immunoglobulins (IVIg) by IV in hospital, or Subcutaneous Immunoglobulins (SCIg) into the fatty tissue at home – and I assume that access to these vary by country, city and maybe other factors.
I’ll talk more about the treatment options and my personal journey with them in another post.
Being diagnosed and starting my treatment really turned my life around. It may be a hassle the treatment isn’t a walk in the park, but the hassle vs pay-off is worth it without any question at all.
What is life like after starting treatment?
It took about 6 months from starting my treatment for me to really start feeling like a real proper human and I felt on top of the world with energy. My quality of life has improved to a place that I didn’t know existed pre-diagnosis as I clearly didn’t know what “healthy” felt like.
And while I still don’t think I live 100% at what other “normal” people do, relatively, I feel pretty amazing. I really do not miss all of the unexplained, unusual, constant illnesses and antibiotics at all.
As I mentioned before, I would put myself in the camp of lucky CVID patients as I am still able to work full-time. I don’t use nearly as much sick leave as I used to, and I can usually lead a pretty active and social life. I even traveled by myself to Mexico and Guatemala earlier this year.
Sure, I get sick sometimes. I’m currently having a rough time with GI issues, and last year I was hospitalised with sepsis, but I try not let these things define me.
The benefit of having a Primary Immune Deficiency is you really have no option but learn to be strong and resilient. You know what good feels like, and you know what it feels like to be so sick, unseen, misunderstood and like a hypochondriac, so you learn to appreciate the small things and fight for what you can.
I hope that this post has been helpful to explain what CVID is to those struggling to find information online. And please keep in mind that this is all from my perspective and understanding so may not be totally correct or up-to-date. I am also in New Zealand so information could vary country to country.
If you have any questions for me that I, or one of my wise sick friends, may be able to answer, please leave a comment below. I’d love to hear from you! Also, if you see anything on here you think is incorrect or out-of-date, please let me know and I will amend.
Here’s to good health – or as good as you can get.
This information is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care providers with any questions about any medical issues you may have.