Why the charity was born

Although I have been symptomatic since birth with multiple admissions and surgeries, I did not receive my diagnosis until I was 16 years old. Yes, 16 years old. 

I remember that day. My Mum had just given birth to my baby brother, I was preparing for my school exams. A letter arrived in the post. The logo and postage stamp gave it away. I opened the letter at breakfast. I read ‘FINAL DIAGNOSIS: Hyper IgD Syndrome’. That was it, the Dr’s finally knew what was wrong with me. Or did they?

My first consultation with my Paediatrician after my diagnosis should have been a relief and joyful. I was very fond of him and he had become a part of my family for 16 years. I sat in the chair and I saw his face. He looked sad, he looked disappointed, he looked exhausted. What was he about to tell me?

After a deep breath, he began to tell me about my diagnosis. The only word I remember that day was ‘Rare’. On one hand I had confirmation that I wasn’t going mad or my symptoms were psychological as previously told by some other professionals. On the other hand, I learned that my condition was rare, one in 350 worldwide to be precise, and the treatment for it wasn’t well known. Great. Just what I wanted to hear three weeks before my first school exam, not!

All these years of missing school, losing friends, staying in hospital wasn’t going to stop anytime soon. We did discuss treatment. The only real suggestion was subcutaneous injections that I would have to self inject with training. Wait a minute. Has he really forgotten about my needle phobia? All of those times of giving me Entonox just for cannula sites or blood withdrawals? Now he expects me to inject myself on a regular basis? 

I gave in, I agreed to trial the injections and be trained by a specialist nurse. Luckily my close school friend came with me and she was also trained so that she could help me. She was, and still is, great at those kind of things. Nothing ever phases her when it comes to me and my health.

My exams came, the true stress of my condition, my exams and Mum just having a new baby was proving to be too much. I ended up taking one exam during an admission in hospital as I had a stress induced flare. I wasn’t sleeping, I wasn’t eating properly, I felt sick and I was depressed. 

Exams were over, and the news came that I would start moving to adult health care services at not just one hospital but three! Three hospitals where they had known me all my life, and suddenly, gone. I received appointments for three different adult care appointments at two new hospitals. My depression was spiralling at this point. My friends were celebrating getting into University and I was left behind, being rejected. That big thick cloud over me just wouldn’t move. 

A few years later, I moved away to be nearer some of the wider family. It was only for a trial period to have a break. The more time I spent there, the more appealing the slower and less stressful life became. One morning I woke up and realised that actually, I didn’t have to go back if I didn’t want to. I could make a new life for myself. That’s what I did. I applied to University as a ‘mature’ student. I was given an unconditional offer. I couldn’t believe it. My dreams were coming true! The feeling of success and happiness had finally started to creep in. 

It was no easy journey. My health was still up and down and by this point I was on my third drug trial. It was amazing. I flew through my final two years, graduating with an upper second class honours degree and diving straight into a full time job at the students’ union, with a 12 month contract. I also had a pretty amazing social life!

Then it was time to say goodbye to University life once and for all. It was time to start my career working with children. Everything I ever wanted. Everything I had worked hard for. This was my time. 

April 2015, crash. Two weeks into my new job, I was bed bound by a horrendous flare and infection. I was signed off work for 4 weeks. I was heartbroken, and so angry with my body. How could it do this to me after all of that hard work? I tried going back, I reduced my hours, I tried so hard to hold that job down. I finally admitted defeat and resigned after 4 months. 

I was stuck, depression was spiralling out of control again, I was financially struggling and I knew something had to change. Surely I’m not the only patient in the UK with an Autoinflammatory condition? I was desperate to link up with others on this journey. 

There it was, it was time to turn those negative feelings and energy into something positive. I set out on a new challenge. Creating a patient organisation for Uk patients. Nothing existed for us so let’s change that. After all, we deserve it. The journey began by reaching out on social media to patients and families all over the world. Finally, the UK patients were grouping together. We could dream big things about our lives but why not make it actually happen? Why not have a charity for patients? Why not support each other? Why not work with our Dr’s and other professionals? After all, that is the only way change will happen right? 

August 2019, we achieved Charity status. It was such an emotional day. Absolutely incredible. 

The world will know who we are.

The world will realise we matter.

The world will care about our rare.

Now, one year in, with over 400 patients to support, networks growing every week, it’s time to work together and make a difference. It’s time patients had access to early diagnosis and treatments and it’s time for us to be heard. 

It is our time to shine. It is our time to say we can achieve, and we will, together, we will.

R.Rimmer 2020