Ellie’s story

“Yes, it’s important to know what condition you have but it’s also important to remember you are not your condition..”

During my childhood, I spent a lot of time in and out of hospital for various reasons, including meningitis, endocarditis and bronchiectasis. I also had a heart transplant and a splenectomy. In total, I had seven heart procedures and many more minor surgeries. I knew there had to be an explanation for my ill health because the rest of my family were healthy.

Being diagnosed with MBL deficiency was like finding the missing piece to the puzzle; suddenly everything made sense

It was also a relief to know that I had a condition that was contributing to my health problems. Of course, it cannot be proven that MBL deficiency was the cause of every illness I had before my diagnosis, and the illness I have experienced since, but knowing I have MBL deficiency is a step forward. I find it comforting in a weird sense.

The diagnosis has given my family a sense of closure because now we know why I’ve been so sick

There is no history of serious medical problems in my family, so the period prior to my diagnosis was really scary and frustrating. My family can breathe a sigh of relief, knowing that there is a reason for my illness.

Life now is a lot more stable and controlled!

I have treatments in place for my MBL deficiency that prevent me from getting as sick as I was and help me to fight off infections. It’s still hard, however. I know that I’m never going to be 100% healthy again and I have to take medication and immune therapy drugs for the rest of my life. There will be times when I find myself back in hospital, but that’s okay. I’m content and happy with everything that’s happened to me, and I’m not scared about the future.

My advice would be, don’t let your diagnosis scare you. Avoid reading multiple articles about your condition

Yes, it’s important to know what condition you have but it’s also important to remember you are not your condition. You still have a life and you still deserve to live it. Don’t let your illness stop you from achieving the goals you want in life. You’re going to have days when you feel on top of the world and days when you’re too tired or ill to move from your bed. That is okay; it’s all a part of life. I will stress the importance of keeping on top of your treatments and medication, as much of a pain as it is. Remember, too, that you’re not alone; there are other people out there who know what it’s like to have a PID. Get out there and enjoy your life.

I remember the day I found PID UK

PID UK’s website popped up while I was searching the internet for information on MBL deficiency. I quickly realised that there are lots of other people out there like me. I didn’t know there were other types of PID and I soon learned there was a whole community of support for people living with immune deficiencies.

PID UK has given me the reassurance that I am not alone in my illness and there is support and help available for people feeling scared or lonely

The emails I get from PID UK are a comfort and remind me that I am never alone with my MBL deficiency.

I wish there was greater awareness of PIDs

I sometimes think back and wonder what my life would have been like if I had been tested and diagnosed at an earlier age. It would have given my parents, my family and my doctors more knowledge about why my body was so prone to catching all forms of infection. Testing at a young age could be a huge benefit, enabling treatment plans to begin at a much earlier stage and preventing hospital stays down the line. I’d also love more mental health support for the PID community. Having a PID can cause feelings of isolation, and it’s important that we not only look after our physical health but also our mental health. Truly, greater awareness of PIDs would make such a huge difference.

Posted September 2020