Adya Gupta Expand Hello, I'm Adya and I'm 17 years old. I was diagnosed with Aplastic Anaemia in 2023, and underwent ATG treatment. Since then, my blood counts have improved. I hope I can make a positive impact through the Youth Board and help other young people feel less alone when they go through this process, as well as raise more awareness about this condition!
Alemtuzumab A type of therapy Expand 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 Conquy, Chair of the Board Amanda joined the AAT's Board of Trustees in April 2020 and became our chair in October the same year. Expand 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.
Anaemia A deficiency in the number or quality of red blood cells in your body. Expand 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.
Anti-fungals Anti-fungal treatments Expand 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.
Ask Daniel: How did you want friends and family to support you? 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. Expand Further information you might find useful... The AAT has a free advice booklet for young people whose friend has been diagnosed with aplastic anameia. Find it here: Ages 5-11, Ages 12-16, For young adults. We also have resources for parents on how to explain aplastic anaemia to your child, and how to support them, which you can find here. Ask a question Need more support? Contact our support team.
Ask Daniel: How was your mental health during treatment for aplastic anaemia? 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. Expand 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: Samaritans: 116 123 (24 hour helpline) or visit samaritans.org Mind: 0800 123 3393 or visit mind.org.uk SANEline: 0300 304 7000 or visit sane.org.uk
Ask Daniel: What should I pack when I go into hospital for a Bone Marrow Transplant? Daniel gives his tips on what to pack for your time in isolation. Expand Further information you might find useful... Most patients, like Daniel, advise a stash of snacks! Some steroids you may be on may mean your blood sugars are higher than normal, which is means your diet for diabetic patients may need careful monitoring - it's important for everyone to take the advice of your doctors and nutritionists as everyone is different. When you're packing snacks, it's also important to stick to a neutropenic diet. Find advice here. If you're snacking or eating more sugar than normal, frequent toothbrushing and good oral hygiene are also super important, and will offset any issues you have with your gums as a side effect of ciclosporin. The AAT has a resource for young people giving advice on preparing for hospital stays. Find it here: Ages 5-11, Ages 12-16, For young adults. Ask a question Need more support? Contact our support team.
Ask Daniel: What was your bone marrow transplant experience like? 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! Expand Further information you might find useful... The AAT has a fact sheet about bone marrow transplants which contains lots of expert information, find it here: Ages 5-11, Ages 12-16, For young adults. Ask a question Need more support? Contact our support team.
Ask Daniel: Will my brother's bone marrow transplant be safe? Daniel has received a question from Fadi about her brother who is likely to receive a bone marrow transplant. Expand Further information you might find useful... Daniel recommends our Facebook Support Group, which is a wonderful place to receive support from our community, you can join here. The AAT has a fact sheet about bone marrow transplants which contains lots of expert information, find it here: Ages 5-11, Ages 12-16, For young adults. Ask a question Need more support? Contact our support team.
ATG Antithymocyte globulin Expand 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.
Blood cells Cells within your blood that can do different jobs. Expand Blood cells are cells that circulate in the blood, including red blood cells, white blood cells and platelets.
Blood count, full blood count or FBC A blood test Expand This is a blood test that counts the number and type of cells in your blood.
Bone Marrow A material in your bones Expand Bone marrow is the spongy material inside your long bones where blood cells are made.
Bone marrow aspirate A small sample of bone marrow taken for examination Expand 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 (trephine) Bone marrow biopsy and trephine sample Expand 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.
Bone Marrow Transplant / Stem Cell Transplant A curative treatment for aplastic anaemia Expand 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.
Callum Tempest After serving as the Chair of our Youth Board, Callum joined our Board of Trustees in August 2022 Expand 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 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 went on to Chair – 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 is the AAT board's patient representative on the Research and Clinical Advisory Panel.
Cannula A temporary thin tube Expand A temporary thin tube put into the vein for the giving of fluids or intravenous drugs, or for taking of blood samples.
Central venous catheter A central catheter/line Expand 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.
Ciclosporin An immunosuppressant drug Expand 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.
Clinical nurse specialist (CNS) Often your main point of contact Expand A CNS is a highly qualified nurse who specialises in a particular area of healthcare. Your CNS is often your main point of contact for information and advice within your healthcare team.