I’m Rachel, I’m 31 years old and I have a very rare blood disorder. It’s called Congenital dyserythropoietic anaemia type 1 (CDA-1) – good luck trying to say that one. It’s also a nightmare to spell it. I still can’t. At least now you can google it. For a lot of years, you couldn’t even do that. That’s right – for the first time in known history, even google didn’t have the answer! You know it’s a rare disorder when Google can’t find it.
With the condition being so rare, unanswered questions are part of the package, which can be scary at times. Treatment choices involve a lot of blind trust. To a certain degree, I can’t plan my future.
I’m someone who just gets on with things. Even on my worst days, I’ll find the positive. So writing a post that highlights the things I struggle with completely goes against my character. I guess I never want sympathy, yet it’s given, unwanted. Empathy is fine, sympathy less so. I’m honestly happy with my life and wouldn’t change it.
Learning more about CDA-1
CDA is a rare inherited anaemia, and the simplest way to explain it is that my red blood cells are misshapen. CDA presents itself differently in each person. There are other types of CDA but I have type 1. My anaemia is moderate; if you looked at my red blood cells under a microscope you would see they look rather funny and full of holes.
I’ve spent a big chunk of my life visiting hospitals. I’ve lost count of the days and hours I’ve spent in them, although I do know that I’ve visited 14 different hospitals in seven different counties. I’m basically a hospital tourist.
In my younger days I had a lot of blood transfusions to keep my blood levels up. This has left me with iron overload, and to add to that, my body actually already produces more iron than it needs. Essentially, I’ve been amply supplied with iron throughout much of my life.
However, I can report after years of intense treatment that my iron level is in the safe range. This involved monthly hospital visits, which were a five hour round trip. I also no longer have blood transfusions or interferon injections as my blood levels are now maintaining themselves, which is amazing!
Day to day life
So, how does my condition impact my day to day life?
Notice I use the word ‘condition’ rather than ‘disability’? Yes, to the world, I’m disabled. But that all depends on what you view as normal and what you view as able. In my eyes, I am normal and able to do the things that I am designed to do. I may not be designed to do the things the world dictates that I should.
The biggest thing I struggle with is fatigue. Yes, despite my blood levels being okay, I still get fatigued. I have days when I can’t get out of bed due to weakness and tiredness. Believe it or not, fatigue is not cured with a nap. People with fatigue are not ‘just lazy’. I’m also not very physically strong either, so I get tired easily. I occasionally use a wheelchair on my worst days or to conserve energy. I have a weak immune system too, so if there’s a bug or cold going around, I’m getting it. Fatigue can also mess with your emotional state and it makes some days just really tough.
The future and next steps
I’m generally a positive, smiling, happy person. But the truth is, sometimes I’m faking it until I make it. And unless I really know you, I’m probably going to cover up how I really feel.
I also have other health conditions that run alongside my CDA. I suffer from joint pain on a regular basis. My mind is always willing but my body is often too weak. I push myself to my limits and I hate letting anyone down, but some days, I just have to cancel plans. You know what, it’s hard!
I struggle with people asking me what I do – I never know how to answer that. I don’t work; I have a full-time job just keeping myself well and functioning. But like I said I don’t want sympathy and you’ll never hear me express these struggles. For all the things I can’t do, there are so many more things that I can.