As children we were always getting infections or sleeping for hours, but nothing was picked up on.
When Jessi turned 10, she was always at the doctor’s surgery and kept being told she had asthma, but Mum knew there was something more going on. This went on for about 3 to 4 years before we got a diagnosis. It came to the point where Jessi was so ill that we weren’t sure if she was going to survive. Jessi actually stopped growing and puberty stopped for her due to being so ill and so skinny. Little did we know that a simple blood test was all it would take to confirm what she had.
A year after Jessi was diagnosed, my symptoms started to set in.
A year after Jessi was finally diagnosed I started to experience the same sort of symptoms and a never ending cough. My mum and our local doctor did have to fight to get me tested and explain what we knew. We found out that we have identical DNA, which meant we both had the genetic disorder.
We went on canal boat trips funded by the PiA (the fore runner to PID UK), as children. This gave us an opportunity to meet other children who had similar genetic disorders. It also gave our parents a week’s break to refuel and just enjoy time with each other as we had trained carers looking after us.
We do home therapy and try to manage everything at home, with the support of our amazing family and doctor.
Every day is different when living with CVID and lung disease. Some days are good; some days are bad. It is uncontrollable. It is a constant battle.
One of the hardest things about living with CVID is just how mentally draining it can be, from fighting infections to fighting the stereotypes caused by looking well on the outside but being ill on the inside (invisible illness).
Being 24 years old and wanting to take control of your life, you face the backlash of ‘Well, you don’t look disabled’. However, after some counselling we’re slowly getting back to a happy place and that’s what’s most important – being positive, happy and enjoying life.
Jodi says: I have loved the performing arts since I was three years old and I have wanted to work in the industry for as long as I can remember.
Doing dance all these years has helped me to keep fit and as well as I can be. It’s also been a great way of getting out of physio! (Let’s face it, no one likes doing physio!) Unfortunately, owing to my health, I have had to make changes over the past two years. Certain symptoms have got worse and physically there are things I’m not able to do anymore, but I have achieved a lot. Some of you might have even met me before!
Jessi says: After leaving college I gained many qualifications as a beauty therapist and began working in the beauty industry.
I achieved many accomplishments and even earned the title of finalist in the Midlands’ beauty therapist of the year competition. Like Jodi, I have had to change career because I’m physically not able to work in the beauty industry anymore, but I am proud of how far we have come. I am now in the process of setting up my own photography business, which will allow me to work when I feel well but continue to support me even on my bad days.
We decided to start fundraising for PID UK because it’s always been a charity close to our hearts and has helped us through so much.
PID UK has supported us in coping with CVID but has also made us aware that we’re not alone with this. It is nice to have a community of people in the same boat as us and helps us to feel so much more like normal people.
In December 2019, our parents took part in an extreme obstacle race and raised over – £600 for PID UK. We are planning our next fundraiser, which will be even bigger!
It is so important to raise money for this amazing charity because for every – £1 raised, 85p goes towards research, care and support for people living with rare immunodeficiency. PID UK is a charity where you see the money being used to create good things.
Posted September 2020