The story of Cindy
I was diagnosed with CVID (Common variable immune deficiency) in Aug 2014. At first it was daunting as I didn’t fully understand what it entails. When my lovely doctor said to me in 2014, that after I get used to treatment I will feel so much better, I couldn’t imagine it. It was a foreign concept I couldn’t get my mind to imagine a better life than I lived before.
Now in 2016 I absolutely can! What I have learned from my condition is: I don’t have antibodies. I get donors antibodies (thank you to the people donating). It comes in ampoules of 5ml and I need to get 60ml a week. I inject Human normal immunoglobulins in my subcutaneous layer with the help of a pump (that assists in 1ml being administered equally in 1 min, that helps minimises my body’s reaction to immunoglobulins). Getting treatment helps me to stay healthy and not get frequent infections and keeping me out of hospital (YAY).
I do not want to take away from the learning curve and the difficulty of having this disease.
It takes a toll on your body, mind and every day life, but once you get used to how things work – it becomes a way of life, instead of taking away from it. I used to be very sick all the time. There was a time that I didn’t even have the energy to do the things we take for granted (cooking, cleaning, socialising). The hospital was my second home and I did feel: this is not life. It wasn’t a good time in my life.
Before being diagnosed I just couldn’t understand why am I getting sick all the time. Someone at work would have the normal flu, when I get it – I end up in hospital. Sure, there even comes a time when you wonder: “Is it in my head? Surely you can’t really get sick so quickly?”
If you know of someone that is diagnosed with a rare disease, the best advise I can give is to support them and be there for them. My amazing husband, great Doctor, family and friends really helped me (and still does) get through this.
Some days are better than others, but overall I am so thankful that I am privileged to get my treatment and live a good life. I am just as efficient as any other person (I work full-time, have a busy social life, exercise and get involved with community projects). I am just more attentive to hygiene around me (house, work and other people), The fact that I do treatments 3-4 times a week has become a way of life and not a burden anymore. I realise when I do treatment I feel better and don’t get sick frequently.
Having a rare disease does not mean I cannot live a full happy life. Here is to good happy life 🙂