This year for aplastic anaemia awareness day, we asked our community of patients, and their families and friends, to tell us what they most wanted people to know about aplastic anaemia. We're created social media sharing images for some of the most common messages, so you can help us get the word out!

Here's what our community told us...

We don't have anaemia!

The number one response we received was that people were tired of being offered iron tablets and explaining that they are not anaemic.

It’s not anaemia and no, iron supplements will not help - it’s more complex than taking supplements and can totally impact a family's ways of life.

Nicola

It’s not low iron levels 🙄 - The amount of times I got told to take iron tablets, even by a GP!

Mandy

It's not just ordinary anaemia. It is most difficult to explain in simple terms, so people struggle to understand what it is and how serious it can be.

Barbara

People don’t often share posts for fundraising or people needing matches. It’s rarely acknowledged that it’s a serious illness it’s just heard as "anaemia".

Kimberley

How many people, even in the health care professional community have said i need to ask for an iron supplement. One even suggested I needed to see a different specialist because it can't be that difficult to treat anaemia - even my kind! 😏

Marion

I grew bored of hearing from friends (many of whom thought that I was anaemic) that I "just need to eat some red meat" or asking if I could just "make a change in your diet … or take a supplement…".

Jodie

We feel excluded because we don't have cancer.

Many patients compared their experience of having a super rare disease that no-one has heard of to the experience of a cancer diagnosis.

People do not understand that the treatment can be the same as cancer treatments and recovery will not just happen overnight. People can think because it’s not well known or the big ‘C’ it’s easily fixed.

Nicola

I don’t think people, even GPs, are aware of how serious AA is. I would have got so much more support if I’d been diagnosed with a cancer, with AAI got none. Thankfully my haematologist was fantastic!

Mandy

We feel very excluded, if we hear one more time "it's not cancer"!!! 😡. It's very hard to get any support, not even free prescriptions for a chronic illness, or PIP.

Claire

Based on my experience being diagnosed with a serious rare disease is totally different to being diagnosed with a serious disease that everyone has heard of. It’s confusing and scary and most of the time you find yourself in the position where you have to explain it again and again; it makes you feel lonely and alienated.

Virginia

Everyone was so well-meaning. But I hadn’t been diagnosed with something recognisable - like cancer or diabetes - and hardly anyone understood the severity or the mechanics of aplastic anaemia.

Jodie

Aplastic anaemia is a serious illness

Patients really struggled to get across the severity of their condition.

You spend 3/4 of your life trying to explain what your condition is, and you see people glazing over. So you end up saying "it's like leukaemia" and then you get the tilted head and the "oh gosh I am so sorry."

Gareth

I found when I was ill most people didn't think it was serious. I never looked ill from the outside, my hair didn't fall out and I didn't have cancer, even though I was having blood transfusions and platelets on a weekly basis for over 6 months.

Jane

Just because I might look well, doesn't mean I am. People have a tendency to think that if you look ok, you must be better. AA, as well as others, don't work like that.

Sean

It's very difficult to get across how fatigued you can feel too. People just tend to say "Oh yes, I know how you feel I get tired as well".

Jean

Understanding the illness is a major issue for all. People often switch off when we try to explain. My doctor has made no effort to understand my illness. When I was first being diagnosed, I took a letter to him for support to understand it. He read it quickly, gave it back to me and said he didn't know what it meant. He made no effort to find out at all. 

And after an operation, I spent an hour explaining to the staff nurse why I needed to stay in overnight (normally day surgery) to make sure my platelets etc were at a sensible level. She was very keen to have me leave as she thought I was being 'fussy'! 

I think that it would be good to somehow educate our own healthcare professionals so that they can support us properly. 🙂 

Marion

One of the things I would like the most people to know about aplastic anaemia is how this disease totally disrupts your life. It affects all aspects of it. There is so much loss for your old self, the life you wanted to have, and the things you wanted to plan.

Virginia

I would really like people to know just how serious aplastic anaemia is. Although it's not classed as cancer, it still falls under the cancer umbrella because of the way it's treated. If it's left unmanaged the consequences could be life threatening. But most importantly I feel people have an outdated view of what a bone marrow transplant actually is, and how its done. I know both myself and Rachel did, we had the image of someone drilling into parts of your bone to extract the cells but that's not how its done these days.

Connor

Aplastic anaemia affects everyone differently

I think it’s important to know that aplastic anaemia affects people differently, not everyone will have the same experience.

India

Lots of people don't know about AA because its a very rare illness. Others perceive AA as hereditary or contagious, which it isn't. Its a long term, chronic illness. Many of us diagnosed with AA also have PNH - Paroxysmal Nocturnal Haemoglubinuria. Other people are very difficult to convince that even though you're in remission there is still a possibility that you may go on to relapse again. Some doctors & clinicians also find it difficult to comprehend that we often experience symptoms one after another, and assume our symptoms are not related to AA.

Aro

There is a tendency for us to forego the story in between diagnosis and recovery. As a mixed-race male my journey with aplastic anaemia has been far from a story of sunshine and roses. I have not run a marathon (and don’t intend to), climbed Mount Kilimanjaro, nor have I toured the world since getting through the worst of my treatment... Everybody’s journey with this rare disease is different.

Ben

Read more

Jodie, Ben and Connor have each written blog entries for us this month, to reflect on their experiences with this rare disease. Please do give them a read!

Everyone's journey is different. If you feel like you don't see your personal experience of aplastic anaemia represented on this website, we would love to hear from you. Email Ellie, our comms manager, at [email protected].

Spread the word

We've created some shareable social media images to help you to spread the word about some of these messages. Click on this image to save it and use it to tell your friends on social media.