Live Yourself Better

My name is Anna and I was diagnosed as having a chronic condition called Common Variable Immunodeficiency Disorder (CVID) in November 2015, aged 16.

CVID is a type of Primary Immunodeficiency Disorder (PID). A PID causes somebody to have increased susceptibility to infections. Flaws in the immune system mean that the PID sufferer also then finds it very difficult to fight any viruses and bacteria that enter the body. This means that avoiding other sick people is very important as a common cold can be very problematic for somebody with a PID. If you have a PID, antibiotics are your best friend. Over the winter months, many of us have to take strong preventative antibiotics that we take when we are not unwell, to try and stop us contracting infections. They help supplement Infusions we have to boost our immune systems.

There are 3 important types of antibodies that your body produces to fight pathogens (germs) that you may be exposed to. Personally, I have low IgG and IgA levels, which means I am at increased risk of further complications when I get a cold or cough, for example. A normal person, with the correct levels of IgG in particular, will be able to fight a cold relatively easily and once they have fought the said cold, they will not get the same cold again. However when you have a compromised immune system, you get the same cold repeatedly as your immune system cannot fight the cold virus, and therefore has no memory of what antibodies were needed when you come into contact with it again! It’s pretty rubbish.

To help me fight pathogens, I have infusions of IgGs (predominantly anyway) and I will be learning how to administer them myself in the New Year! Also, whenever I develop a fever or a sniffly nose, I have courses of antibiotics as a ‘back up’ at all times, which I can start to take – as I said, antibiotics are our best friend!

That said, they are only good once they have worked. Many antibiotics have horrible side effects and can make you feel pretty awful whilst they make you better. Not to mention the fact you may need more than one course, they may not be enough and you might have to be admitted to hospital to have IV antibiotics, or they may just not work and again – a trip to hospital is necessary.

Also, overuse of antibiotics is dangerous as they can start to become ineffective or there’s a heightened risk of antibiotic resistant strains of certain infections developing. This is why even if you don’t have a PID, it is important you finish a full course of antibiotics EVEN IF you feel better a couple of days before you are due to finish your course. Furthermore, it is also a big reason why when you have a PID you want to try and avoid getting sick in the first place…

…and that’s why I have created this website.

This website serves as not only a record of my own journey living with CVID, but also a resource to help you all ‘Live Yourself Better’. The name of this website can be interpreted in two ways:
1.To be the best ‘you’ you can be; i.e trying to live as positively as you can despite having a chronic condition which can be exceedingly difficult at times.
2.To live in a way that makes you as fit and healthy as you can be so you can spend more time being ‘better’.

I would like to stress that this website is not JUST for people who have PIDs! This is for the friends and family of people with a PID, people who take immunosupressant tablets for whatever reason, people who are generally interested in also being as fit and healthy and WELL as they can be, and also for anybody who is just looking to learn a bit more about what it’s like to live with a rare disease.

I also have Cyclical Vomiting Syndrome, Elhers Danlos Syndrome – Hypermobility Type, and I additionally suffer from terrible migraines.