So, your child has just been diagnosed with common variable immunodeficiency, or CVID.
You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it comes to obtaining information. But, being that CVID is one of the rare disease, it’s not unlikely to have a doctor who can’t give you the answers you need.
Let’s do this. How about I take a whack at answering some of those burning questions? Yes? Great!
What the heck does common variable immunodeficiency mean exactly?
Good question! Let’s break it down. “Common” refers to the fact that 1 in 25,000 people are diagnosed with CVID. That may not seem like a lot, but out of all the primary immunodeficiency disorders, CVID is “common.” “Variable” refers to the fact that CVID really does vary from person to person, based on the category and scope. “Immuno-” translates to “immune” and “deficiency” is pretty self-explanatory.
So, if your child is diagnosed with CVID, it means they run a greater risk of getting infections because their immune system is malfunctioning and not producing an adequate amount of antibodies to protect the body.
Why does my child have CVID?
The million dollar question, isn’t it? Short answer? Doctors are never really sure. They suspect it has to do with defective genes. However, if you look back at your family tree, you may find primary immunodeficiency disorders running in the family, whether it’s CGD or SCID or any of the others.
Can CVID be cured?
No, not really. Bone marrow/stem cell transplants have long been a part of treatment discussions regarding primary immunodeficiency disorders. This avenue actually has quite an impressive success rating, so it might be worth considering with your doctor.
Gene therapy may be something else to consider–for a number of reasons. If successful, gene therapy…
- Will save you money on long-term treatment
- Promises the hope of a cure
- Has a promising track record
- Can lower the risk of health complications associated with CVID, like cancer
- Potentially improve your child’s quality of life
So, there IS long-term treatment?
Yes! Immunoglobulin replacement therapy (IRT) is the most common, and can drastically help improve symptoms. What’s more, if you were to combine IRT with antibiotic therapy, your child’s treatment regimen can be even more effective!
What will my child’s life look like with CVID?
Well, it won’t be perfect, but whose is? Luckily, with the treatment options available today, children with CVID are expected to live lives closer to “normal.” It’s better if the diagnosis was made early, rather than later, before too much damage is done.
What can I do?
I was waiting for you to ask that. Well, there’s A LOT you can do. I’ll give you some advice based on my research and what I’ve learned through experience:
- Try not to put your child in a bubble. If you’re so scared of your child getting sick that you keep him/her inside, away from the sunlight, away from friends, and away from the fun of making childhood memories, you’re ultimately harming your child more. Let your kid be a kid.
- With that being said, be diligent about making sure your child takes his/her treatment. If you don’t want your child to live in a bubble and live their life like other kids, you’re going to have to arm them, so to speak. Don’t skip their treatments. It can make the difference between life and death.
- Remind your child to wash their hands and be vigilant over risky behavior. Germs are EVERYWHERE. Make sure your child knows that. Teach them early on the importance of washing their hands and wiping down surfaces at school or home. This will lessen your stress when your child isn’t with you.
- Regular doctor appointments are a must. Your doctor will want to know how your child is doing on treatment and if there’s any changes in their health. Your doctor should be your point-of-contact when it comes to living with CVID. Knowledge is power! Don’t take that for granted.
- Be open and honest with people about your child’s disease, so 1) they’re aware of germs and how it could affect your child, and 2) so they, too, don’t put your child in a bubble. This is especially important with the school faculty. You can’t be everywhere your child is, so you’ve got to recruit other people to be your “eyes” in those instances.
Follow this advice, and you’ll be good to go!
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