The author of this blog in an IMMUNOe Health Centers patient who had been seeing Dr. Melamed for the past 22 years. Learn about her personal journey living with CVID and HAE – the challenges, fears, and the valuable lessons she has learned along the way.
I will be writing about my Common Variable Immune Deficiency (CVID) and Hereditary Angioedema (HAE), my treatment and my experiences from a patient perspective. It has been a long journey and not something I have ever shared before. I hope that this might encourage someone. I was diagnosed and have been receiving treatment from Dr. Melamed at IMMUNOe from the beginning – for that I am thankful. From the outside looking in everything looks very normal – that’s the difficulty with these disorders and the blessing – no one can tell by looking at you.
I’m a wife and mother of three children – 4 years and under. It’s loud and chaotic and I wouldn’t trade any of it. What many people don’t know is that I was diagnosed with CVID fifteen years ago and HAE five years ago. Like many who have complications from CVID, I have a history of cancer, HUS, numerous surgeries, and so many infections that even if I tried I would never be able to remember them all. With HAE, I sometimes have extreme flares that seem to go through cycles. While other times I can go for months without any swelling episodes. Everyone seems to cope with being diagnosed with an incurable disease differently. I have now been diagnosed with two.
I started IVIG infusions when I was 12. Because I was young, I chose the denial route for a lot of years. I wanted to be able to keep up and do everything that a typical healthy person is able to do. At about 18 I decided that I wanted to take a break from doing my IVIG infusions – I was doing well so maybe I didn’t need it any more. I have a wise doctor that let me take a break so I could realize how badly I needed them. He told my mother that you can’t make someone do infusions – they must want to. After completing my sophomore year of college, I became so sick that I begged to start the infusions again. I also receive HAE infusions twice a week.
I spent a lot of years living with a real fear that if I admitted being sick that that would define me. I now realize that my disease isn’t who I am but it’s definitely a part of me. I’ve now learned how to make boundaries for myself that help me to stay well. I will be sharing some of my experiences and what I have learned that keep me healthy both physically and emotionally – wellness is the whole person. Even though having rare diseases brings a lot of complications with everyday life it has also taught me a lot of good things as well. Probably the most important lesson I’ve learned is every moment is precious and live life to the fullest!