AA voices is the area of our website where people affected by aplastic anaemia share the stories they feel are important, in their own words.
If you would like to tell your story here, please get in touch with Ellie, Comms and Fundraising Manager, by emailing [email protected],uk. We would like to hear from anyone with a personal experience of aplastic anaemia - whether you are or have been a patient yourself, or you are a friend or family member whose life has been affected. There is no minimum commitment - you might like to write regularly or just blog once!
Everyone's experience of aplastic anaemia is very different - and we would like to reflect this by sharing a full range of experiences. In particular, we would love to hear from people who feel their experience is currently underrepresented on our website: for example this might include someone who is currently on watch and wait, or a family member who is coming to terms with the loss of a loved one. If you don't see a story like yours on our website and would like to provide that voice - we would be very grateful.
For Rare Disease Day 2021, Connor reflects on his experiences as dad to one year old Max, who is in treatment for aplastic anaemia. Read more
As a 22-year-old it never did dawn on me that I could get ill long term. Read more
How does it feel to get a disease you’ve never heard of? Read more
Friday 19th of August 2016. That’s when it all started, a date that will remain in my memory for the rest of my life. Read more
My name is Barbara, I'm 65 years young and I live in Dublin. I have been diagnosed with Aplastic Anaemia / MDS overlap. Here is my story. Read more
What’s ‘normal’ for a 38-year-old woman? Marriage? Children? Successful career? 10 years ago, this is exactly where I thought I was headed… Read more
Here is my update following my first blog last year! Read more
Most people have seen the film, Forest Gump and so I’ll start my story with a quote from another man’s journey; “Life is like a box of chocolates, you never know what you’re going to get!” Read more
In Ireland we know of only 3 other people with AA. Two of whom are much younger and we have only heard about them - we are not in contact. That is how isolating it is. Read more
Our little story on James’s Chartership 🤗 .... Read more
Duane reflects on the tragic loss of his wife to aplastic anaemia Read more
After my treatment for aplastic anaemia, my husband and I discussed the possibility of trying for another baby. The research out there was limited and the data - not all that reliable. Could I go through with a pregnancy and risk the very real possibility of relapse? In 2015 we bit the bullet, tried and fell pregnant! I was over the moon, but I was terrified. Read more
I remember while I was receiving treatment how desperate I had felt to be normal like my friends at school, to be able to play out, take part in the school sports day and spend time with my sister. But, years later when I finally started recovering, I remember feeling an overwhelming sense of panic Read more
Mental health issues around serious illness are complex. The medical doctors do their best to heal the physical self but wellness is about the whole self. For young people with few life experiences a serious illness is hard. Read more
Aplastic anaemia and bone marrow failure are very complex rare conditions, requiring the input of highly specialised caregivers who help to educate fellow staff, patients and their families. This sharing of knowledge is integral to my role and is one of the main reasons it has always appealed to me. Read more