A rare bone marrow failure disease caused by low blood cell counts.
A type of therapy
An antibody based therapy that is aimed at Lymphocytes (A type of white blood cell and key part of the immune cell that attacks the stem cells in the bone marrow). This therapy is commonly used as part of the preparatory treatment before the stem cell transplant.
Amanda joined the AAT's Board of Trustees in April 2020 and became our chair in October the same year.
Amanda is an executive coach, working with leaders and managers, mainly in the arts, education and the third sector. Previously she had been editorial director at Heinemann publisher and MD of the literary estate of Roald Dahl. While there she developed and had responsibility for two charities, Roald Dahl’s Marvellous Children’s Charity, a grant-making foundation working to improve the lives of seriously ill children, and the Museum and Story Centre which bears the author’s name, of which she became chair. Amanda’s commitment to our work is founded on the experience of her daughter, who was diagnosed with Aplastic Anaemia in 2019. She is also a volunteer prison representative for the Shannon Trust, which aims to transform peoples’ lives by encouraging prisoners who can read to teach literacy skills to those who cannot.
A deficiency in the number or quality of red blood cells in your body.
You have anaemia when you don’t have enough haemoglobin (found in red blood cells) in your blood. It can mean that your muscles don’t get as much energy as they need, so you may feel tired or short of breath.
A number of drugs that can be used to help fight/stop fungal infections. Examples of these drugs are amphotericin, posaconazole, fluconazole, voriconazole and nystatin.
Ashleigh was diagnosed with AA in 2009 and received ATG the same year. She relapsed in 2016 and received a second course of ATG, leading to her current remission. She aims to help others understand their condition and wants to cultivate a safe environment where people can talk about their experiences without feeling judged or not seen.Ashleigh is a big fan of video games, if anyone ever wants to chat!
Wondering how to best support someone close to you who has received a diagnosis? Daniel shares what he found most useful when he was going through the early stages of aplastic anaemia.
Further information you might find useful...
Need more support? Contact our support team.
Daniel talks about some of the difficult times he went through mentally when he was having a bone marrow transplant as treatment for his aplastic anaemia, and in the years following.
Content WarningDaniel talks openly in this video about some of the difficult times he went through mentally when he was having a bone marrow transplant as treatment for his aplastic anaemia, and in the years following. We are very grateful for Daniel sharing his personal perspective, and believe this video could be useful for people going through similar experiences. However, it may be best avoided if you currently prefer to hear positive stories, and may be a difficult viewing for someone anticipating treatment.
We are here for you. The Aplastic Anaemia Trust is here to support anyone affected by aplastic anaemia through your treatment and beyond. Contact our support team.
You can find out more about the Britain Get Talking campaign that Daniel mentions here.
If you're struggling with your mental health it can help to talk to a professional who understands. We recommend these expert services:
Daniel gives his tips on what to pack for your time in isolation.
Daniel tells the story of his bone marrow transplant experience - how he felt before and afterwards, and the things that surprised him along the way!
Further information you might find useful...
Daniel has received a question from Fadi about her brother who is likely to receive a bone marrow transplant.
ATG is a purified serum that suppresses the immune system to allow the bone marrow time to recover. It is produced by injecting animals (horse or rabbit) with white blood cells called lymphocytes. The animal then makes antibodies which are collected and purified to produce globulin.
ATG can either be used ahead of a stem cell transplant (rabbit) or with ciclosporin as a stand-alone treatment to let the bone marrow recover.
Find out more about ATG here.
Cells within your blood that can do different jobs.
Blood cells are cells that circulate in the blood, including red blood cells, white blood cells and platelets.
A blood test
This is a blood test that counts the number and type of cells in your blood.
A material in your bones
Bone marrow is the spongy material inside your long bones where blood cells are made.
A small sample of bone marrow taken for examination
A small bit of bone marrow that is taken under local anaesthetic from either the hip bone or breast bone. The sample is then examined by microscope for abnormalities in the young blood cells.
Bone marrow biopsy and trephine sample
A small sample of bone marrow tissue is taken under local or general anaesthetic from either the hip or breast bone for examination. For AA a bone marrow biopsy is needed to confirm the diagnosis.
A curative treatment for aplastic anaemia
This is a type of treatment for bone marrow failure diseases such as aplastic anaemia.
The patient is given drugs such as chemo-therapy and/or ATG before the transplant to weaken the immune system, thus allowing the bone marrow to accept donor stem cells. The healthy stem cells are transfused into the patient. This is the only treatment used in the cure of severe or very severe aplastic anaemia, but it is the most invasive.
Already the Chair of our Youth Board, Callum joined our Board of Trustees in August 2022
Callum is Programme Manager for the Diocese of Leeds’ award-winning music programme, a charitable initiative that brings sustainable music-making opportunities to around 7,500 children and young people in state schools across Yorkshire. He is also Operations Consultant for the National Schools Singing Programme, founded and supported by the Hamish Ogston Foundation, which is replicating the Diocese of Leeds model across the UK.
Callum was diagnosed with aplastic anaemia in 2020 whilst completing his degree in Economics at the University of Bristol. He received a stem cell transplant later that year and joined the AAT’s Youth Board – which he now chairs – whilst recovering. As a former patient, Callum is committed to supporting the AAT’s mission and ensuring fellow patients can access the support and treatment they need.
Callum joined the Youth Board in 2021 while recovering from a stem cell transplant, eager to make something positive out of his experience with aplastic anaemia and passionate about helping others access the support and treatment they need.
He became Chair of the Youth Board in 2022 and, as a trustee, works to ensure young people’s voices are heard throughout the charity.
A temporary thin tube
A temporary thin tube put into the vein for the giving of fluids or intravenous drugs, or for taking of blood samples.
A central catheter/line
A central venous catheter, more commonly called a central line or HICKMAN line is a small flexible plastic tube put into the large vein somewhere above the heart. This is used for giving fluids/drugs or for taking blood samples.
An immunosuppressant drug
An immunosuppressant medication given to reduce the problems that your immune system is causing to your bone marrow and allowing it time to recover and start making cells normally again.
Tacrolimus is a similar drug used for the same reasons. Sometimes called cyclosporin (more usual in America.)
Find out more about ciclosporin here.