The Beginner’s Guide to Common Variable Immunodeficiency
Welcome to the Beginner’s Guide to Common Variable Immunodeficiency! I understand the challenges and emotions you are facing. Whether you are recently diagnosed or have been managing your CVID for a long time; I hope to provide you with a personal, first-hand account of my CVID patient experience.
On November 1, 2017 I was diagnosed with Common Variable Immunodeficiency. I was lucky to finally receive a diagnosis, but not lucky enough to escape years of unexplained illness, pain and damage to my body. This is why it is important to educate and spread awareness about Common Variable Immunodeficiency (CVID) to doctors and their patients.
After my diagnosis, I started a journey that will last a lifetime. However, in just the past four years I have experienced and learned much about living with CVID. Although it was hard to be vulnerable about my physical, mental and emotional experiences so soon after my diagnosis, I decided I needed to share my story to help other patients who were also newly diagnosed. So, I started CVIDiva.com, the Diary of a CVIDiva Podcast and Youtube channel to reach as many people as possible. Since my diagnosis, I work with CSL Plasma to spread the word about plasma donation, and served on a Primary Immunodeficiency Patient Leadership Panel with CSL Behring. I recently started volunteering for the Immune Deficiency Foundation as a Peer Support Mentor, Plasma Awareness Coordinator, and Primary Immunodeficiency Advocate.
What is Common Variable Immunodeficiency?
Common Variable Immunodeficiency is an umbrella diagnosis for Primary Immunodeficiencies with variable genetic causes or unknown genetic causes. CVID patients have low levels of immunoglobulins and antibodies in their blood which causes an increased susceptibility to infection. Many patients are unable to build antibody immunity to common illnesses like colds and the flu. In addition, CVID patients are at more danger of getting cancers. They can also experience damage to bodily organs from infections that their immune systems can’t clear.
CVID is termed a Primary Immunodeficiency because they were born with the genetic condition. You can not catch, spread or develop CVID. I often compare CVID to the secondary immune deficiency HIV to explain the difference.
How to Learn More About Common Variable Immunodeficiency
Your first and your best resource to learn more about CVID is from your diagnosing doctor(s). Your doctor will be able to explain your CVID diagnosis particulars and the best available treatments for you. He/She can also treat any symptoms, medicine side-effects and provide referrals to other specialists.
I would highly suggest inviting your loved ones to accompany you to a doctor’s appointment. This will help them better understand your condition. If this is not an option, your doctor can provide you with literature and/or verified resources.
Over the years, I have compiled a list of some of the best informational resources on Common Variable Immunodeficiency. Please take a look at my Resources page for links to these reputable organizations.
Tips for Living Successfully with Common Variable Immunodeficiency
Determine and Seek Out Support
Upon diagnosis, your brain might start racing, you might feel physically shocked or you might start balling like I did! Then, later, other emotions will surface. I would highly suggest seeing a therapist that specializes with chronic illness. As you continue to learn more about CVID and your treatment, you’ll need support. You might also need a way to release and deal with the changes in your life. I suggest finding something that facilitates that release and feels good! You could blog, journal, or talk to someone close to you. Screaming out loud when no one is home or exercising when you feel well enough is also effective. It can be anything that works for you.
Get Close With Your Nurses
Get to know your infusion nurses and staff. You will see them a lot more than you will see your doctor. They will teach you how to do your own infusions at home or administer your infusions in a clinic. Plus, they are a wealth of information.
Just Say “NO”!
You might need to just say no more often to social events. You might need to say no to goals you had previous to your diagnosis. Depending on your symptoms, you might not have the energy or feel well enough to do everything you want to. This is what kills me, but we have to learn to take care of our health first and foremost. (Click here to read my admittedly whiny post about some of the ways CVID has changed my life!)
When you feel tired – rest. I hear these words a million times a day from my husband! He knows resting will improve my CVID symptoms in the short term and even prevent me from getting severly sick. Create a good bedtime routine and get some good sleep.
Knowledge is Power
Learn as much as you can about CVID and be your own best health care advocate. Trust yourself and know yourself enough to ask your nurses and doctors what might seem like tough or unusual questions. There may be times you don’t feel well enough to act on your own behalf. During these times, ask a loved one or look into the option of a healthcare advocate.
You can find many tips throughout my blog posts. Subscribe now so you don’t miss any new posts!
Common Questions/FAQ About Common Variable Immunodeficiency
Why are CVID patients called Zebras?
Zebras, as a mascot, were first identified with another rare disorder called Ehlers-Danlos, but quickly became adopted by a number of rare disorders. Per the Ehlers-Danlos Support UK website:
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions. But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.
Can CVID just go away?
No, once you have CVID, it will not just go away. There is no cure yet, however there is treatment. Lifelong treatment with medicine made from plasma containing healthy antibodies from donors. This medicine is in liquid form. It is administered either intravenously (through an IV) or subcutaneously (in your body’s top layer of fat).
Can CVID do permanent damage to my body?
Yes, according to Dr. Marc Riedl (section head of clinical immunology and allergy in the Department of Medicine and the director of clinical trials for the UCLA Food and Drug Allergy Care Center at UCLA Medical Center), “Certain immune deficiencies such as CVID and XLA [X-linked agammaglobulinemia] can result in permanent organ damage because of the risks of recurrent infection due to antibody deficiency.” CVID and XLA are multisystem disorders and, thus, present to physicians in diverse specialties.
Why is it called CVID?
According to the Immune Deficiency Foundation, The reason CVID was termed “common” is related to the original WHO decision to lump several disorders under the label “common variable immunodeficiency” since considering the proportion of all immunodeficiency disorders that fell under that heading, it was the most common, yet variable.
Is CVID rare?
CVID is a rare disease. However, because it is an “umbrella” term, it is the most common of all the primary immunodeficiency rare diseases. One in 25,000 people have CVID.
Is CVID an autoimmune disorder?
No. Common variable immunodeficiency (CVID) is an immune system disorder that causes you to have low levels of the proteins that help fight infections. Some people with CVID can also have autoimmune disorders. Because the immune system is so complex, parts of their immune system can overreact.
The Last Thing You Need to Know about Common Variable Immunodeficiency
You are not alone if you have CVID. Although it is a rare disorder, I have personally seen support and awareness grow since my own diagnosis. I hope my blog helps you learn more about living with CVID. Your own doctor’s office and several national organizations are sources of support. Along your journey, you will find ways to connect with other CVID patients.
Just four years ago, this was harder for me to find online. So, please share this post with your friends and family and on social media.
Stay Strong my Zebra Friends!