This is a continuation of my post on Common Variable Immune Deficiency (CVID). If this is your first time, start to have a better understanding of what it means to have CVID.
How is CVID diagnosed?
If you are “thinking zebra” – meaning you’ve had a history of
recurrent, severe infections, you need to find an immunologist who will run a series of blood tests to measure the levels of antibodies in your blood. A diagnosis will be made if the results show low levels of antibodies in your blood, including IgG, IgA, and sometimes IgM. The doctor will immunize you with specific vaccines, and then measure your antibody levels several weeks later. If you show little to no response, this will confirm your specific deficiencies.
And if you DO have CVID, here is what else can happen:
CVID not only causes our immune system to fail, but it can also also lead to other autoimmune diseases. HOWEVER, because we lack antibodies, when we are tested for diseases that require antibody tests – like Lupus, for example, we will most likely test negative – when in fact we may actually have the disease. (Isn’t that comforting? For us “Zebras” a no is just a “maybe not”.) Often times a diagnosis of a concurrent autoimmune disease may be given based on symptoms alone. CVID is associated with multiple autoimmune diseases including hemolytic anemia, ITP, rheumatoid arthritis, lupus, inflammatory bowel disease (IBD) – as well as autoimmune liver disease – which is where my story picks up speed. (Admit it, you need a cupcake now, too.)
Finding Hope and Getting used to Needles
We “Zebras” are lucky to be living in a time where treatments are becoming more mainstream, and resources are plentiful. Depending on your particular areas of immune deficiency, your doctor may decide to treat you with prophylactic antibiotic therapy. She may also recommend that you begin Immunoglobulin Therapy – which uses plasma from“normal” donors to replace your incomplete immune system. Your team will decide whether you will benefit from weekly “at home” therapy -which is given subcutaneously (just under the skin, you aren’t aiming for a vein) – or if you will need to go the intravenous route, which is administered monthly at an infusion center. Advances are being made all the time, with Stem Cell treatments and Gene Therapy making headlines almost every week. Another HUGE source of encouragement (for me) has come from online support groups, where I’ve received practical suggestions for navigating treatments, as well as the power of a shared experience. I’ve logged on a few times in the middle of the night with a nagging fear/suspicion and have had great answers waiting for me by the time I wake up.
The Silver Lining….
The upside to having CVID is that your doctors will most likely take you seriously. It’s crucial to have a collaborative relationship with your doctor, so that when you come in with raging symptoms, but no fever (many CVID patients don’t have the immunity to mount a febrile response to illness), he will proactively treat you. The other upside is that due to the increased risk of cancer, you will have frequent blood draws and imaging, which (hopefully) reduces the risk of cancer advancing before it’s found. I also qualify to get priority service when the power goes out because I’m not supposed to be in extreme conditions. It’s so important to arm yourself with knowledge and then give yourself time to adjust.
Immune Deficiency Foundation: http://primaryimmune.org/
Other Immune Deficiency Associations: http://www.immunedisease.com/primaryimmune-resources/organizations/support-groups.html
Immunoglobulin Treatment Tips:
Online Support Groups: http://idffriends.org/wp-login.php?redirect_to=http%3A%2F%2Fidffriends.org%2F&reauth=1
Finding an Immunologist: http://allergist.aaaai.org/find/