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.
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Shwachman Diamond syndrome (SDS) is one of the rarest of the rare genetic conditions connected with aplastic anaemia. Julia, mum to eight-year-old Lara with SDS, and Cameron, who was diagnosed himself as a young adult, met with me to discuss their stories and the advice they’d want to pass on to others facing a similar diagnosis. Read more
Loneliness is rife among people living with rare blood disorders. But there’s a whole community of people out there who are willing to connect. How can you speak to friends about your condition? What can you do to combat loneliness when you’re struggling to leave the house? How are people with similar conditions finding each other? What can you do to manage your condition when you’re out? How do you recruit friends to help you if things take a turn? Read more
What is it like living with a rare blood or bone marrow disorder? This episode sets the scene with the series by discussing what it’s like to live with a rare condition day-to-day, from home life, work, going out, dealing with the healthcare system and more. Read more
I was listening to words I did not understand. I was then sent to another department for x rays and blood tests. That was when I cried. Having never had a major illness in my life I was suddenly really scared. Read more
When I was diagnosed, I was in denial and wouldn’t even tell people the name of my condition. But when you have AA you often have to take the lead in your own care. I've learned that AA and the ability to handle what it threw at me was in fact, not a weakness, but a strength. Read more
The pandemic has hit everyone hard. Unfortunately for me, my diagnosis in March 2021 made everything that much harder. Read more
Daniel had aplastic anaemia 11 years ago. After two courses of ATG and a bone marrow transplant, he is now doing well, and would love to support other patients by sharing his experiences with you. Ask him a question! Read more
A FAQ video to answer the questions I've been asked: How was I diagnosed? When can I go back to work? Am I bored? How did I deal with being diagnosed during the Covid-19 pandemic? What were the signs? How often am I followed up now I'm at home? How did the raffle go? Did the rash go? Is my AA related to my alopecia? What happens next? Read more
When Merv was diagnosed with aplastic anaemia he was told that if left untreated he would have had only nine months to live. A few years later, his son was born with a life threatening heart condition. Now he's determined to give something back. Read more
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
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
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
Little did we know what was coming the next day in May 2017! Read more