Supporting someone who has aplastic anaemia My brother or sister has aplastic anaemia A guide for young adults supporting a sibling Finding out your brother or sister has aplastic anaemia may come as a bit of a shock. You may not have heard of it before as it is quite rare. Some young people tell us that they felt scared, confused and overwhelmed at the time their sibling was diagnosed. There might be sudden changes for you and your family, and you might feel angry and upset about that, wanting things to go back to the way they were. You are not alone. It is important for you and those around you to make sure you are OK too. Skip to: What is aplastic anaemia? Treating aplastic anaemia Your feelings Changes to everyday life Talking about your brother or sister’s AA Being a stem cell donor Your brother or sister’s future after aplastic anaemia Prefer print? You can also order this guide as a free printed booklet Order one now What is aplastic anaemia? Aplastic anaemia is a rare blood disorder, caused by the bone marrow not working as it should. In people with aplastic anaemia, the bone marrow doesn’t produce enough stem cells, so in turn, they don’t have enough blood cells, which are very important. Read more about what aplastic anaemia is and why it makes someone ill. Aplastic anaemia can be inherited, or it is sometimes caused by an autoimmune reaction, which means the body mistakenly fights against its own cells. However, in many cases, the cause is unknown and it may develop for no obvious reason. It is not something you can catch, and it doesn’t happen because of something your brother or sister did or didn’t do. Symptoms Symptoms of aplastic anaemia will vary from person to person, but here are some of the common things you might notice in your brother or sister: • They might be particularly tired. This is a sign of not having enough red blood cells. • They might get poorly with infections or colds more often than you. This is a sign of not having enough white blood cells. • They might get lots of bruises or bleed very easily. This is a sign of not having enough platelets. Sometimes the symptoms of aplastic anaemia are similar to those of certain types of cancer, like leukaemia, which is a cancer of the blood. If you hear people talking about cancer and you are feeling worried or scared, talk to your parents, other family and friends or the doctors treating your sibling - our you can get in touch with us for a chat. Aplastic anaemia is not a type of cancer – it is a rare blood condition. It really snuck up on all of us. It was the second day of our university Easter break/ reading week when Mum really thought there was something wrong with him. She saw how tired he was and he couldn’t even take his bags upstairs to his bedroom. She rushed him to the GP and they straight away sent him to the hospital. The urgency in how the GP wanted him to go straight to the hospital was when we realised how serious it may be. Initially when he went to the GP we just thought it was anaemia that was going untreated, but when the doctors couldn’t find a reason for what he was experiencing, we knew it was serious. My initial reaction was one of confusion as to how they couldn’t work out what was going on, but I really thought he would be out in a couple of days and within a couple of weeks be fighting fit again. - Euan, aged 18 when his brother was diagnosed Testing for aplastic anaemia To find out for sure that your brother or sister has aplastic anaemia, they will need to have some tests. Usually, they will have a test with a needle that takes out some of their bone marrow. This is called a bone marrow aspiration or biopsy. When the doctors have tested the bone marrow and found out more about what is happening inside your brother or sister’s body, they will be able to decide what treatment they will need. After your brother or sister’s diagnosis, their medical team might recommend that you also have some blood tests. This might be to rule out any undetected bone marrow disorders if they suspect the aplastic anaemia is inherited. It might also be the first step in preparing for the possibility that you could be a stem cell donor (more information about this below). I remember he used to complain that he was experiencing very bad headaches and that he could hear ringing in his ears after walking up a flight of stairs, etc., which was strange as he was very fit. I remember finding Ben crying one day because he couldn’t take the pain of the headaches anymore, and that was the day he went to the doctor, who then discovered that Ben’s blood levels were extremely low.I was extremely worried when Ben was in hospital as it escalated very quickly from him just visiting the doctor for bad headaches, and we did not realise the severity of the situation. For a while we were unsure what was wrong with him, so it was the fear of the unknown. When Ben was diagnosed with aplastic anaemia, I remember feeling relieved as I thought it was just a form of anaemia, but I didn’t realise how ill he would become and how much it would change his life.- Amy’s story, aged 19 when her brother was diagnosed Treating aplastic anaemia Different people will need different types of treatment for their aplastic anaemia. The doctors will talk to your brother or sister and your parents or carers about what this will mean for them. Red blood cell or platelet transfusions Red blood cell or platelet transfusions can be an important part of treatment for aplastic anaemia. They can’t treat the underlying condition, but they do provide healthy blood cells for a period of time when the body is not producing its own. During a red blood cell or platelet transfusion, your brother or sister is given donated blood cells. In the UK, once blood has been collected from volunteer donors, it is split into its component parts: red blood cells, white blood cells, platelets and plasma (the part that carries proteins around the body). This means that they can be given just the part(s) they need. During a transfusion, donated blood cells are given through a plastic tube. This might be through a ‘cannula’ in the back of your brother or sister’s hand or through their ‘central line’ in their chest. If they are going to have ongoing treatment, they will usually have a central line fitted. This can be used to deliver medicine and transfusions, and to take blood for tests. A transfusion is a very safe procedure. Donated blood is carefully checked for infections and to make sure that it matches the recipient’s own blood type. The risk of any harm associated with a transfusion is very low, and it can make a big difference to your brother or sister’s initial symptoms. Immunosuppressive therapies Your brother or sister might be offered immunosuppressive therapies, such as anti-thymocyte globulin (ATG) and ciclosporin. This might happen while they wait for a stem cell donor match or it might happen straight away as part of their initial treatment. In aplastic anaemia, the patient’s immune system can fight against the bone marrow. Immunosuppressive medicines contain antibodies that suppress (quieten down) the immune system. This gives the bone marrow a chance to start working so it can produce healthy blood cells again. Immunosuppressive therapies will involve staying in hospital for two or three weeks. They are delivered through the patient’s central line. Your brother or sister might also be given steroids or antibiotics at the same time as immunosuppressive treatment, and they might still need to undergo regular transfusions. All these can reduce the risk of any side effects from the immunosuppressive medicines and can help to manage their symptoms while their underlying condition is being treated. Their blood cell counts will be monitored frequently to check on progress Stem cell transplant The definitive treatment for your brother or sister’s aplastic anaemia might be a stem cell transplant. Sometimes this might be called a bone marrow transplant. A stem cell transplant is where healthy stem cells from a donor are infused into the bloodstream. They travel through the bloodstream to the bone marrow, where they begin to make new stem cells and ultimately, new healthy blood cells and platelets. A donor needs to have a good tissue type match so that their stem cells aren’t rejected by the patient’s body when they are given. Full brothers and sisters have a one in four chance of being a match. Parents and other family members might also be tested, but the chances of them being a match are smaller, including for half-brothers and halfsisters. Otherwise the stem cells will come from another donor that they don’t know. The important thing is that they are healthy cells from a matched donor. There is more information for you about becoming a stem cell donor below. To prepare their body for new stem cells, your brother or sister will need to have a treatment called ‘conditioning therapy’. This is a combination of chemotherapy medicines, which will make space for the new cells and allow them to take hold properly. Conditioning therapy will also break down their immune system so that their body doesn’t reject the new stem cells. During the transplant itself, the new cells are delivered through their central line. They will stay awake throughout, and it will feel very similar to having a blood transfusion. Your brother or sister will have to spend a number of weeks in hospital following their transplant. They will be monitored closely as their new stem cells begin to work. The doctors will be looking for signs of ‘engraftment’, which means that the stem cells have successfully attached themselves to the bone marrow. The first sign of this might be an increase in the number of white blood cells they have. They will have to spend time in isolation, which means keeping them away from other people in a germ-free environment. This is to protect them from infection while their new immune system is developing. We talk a bit more about isolation below. Your feelings You are likely to have a whole range of different feelings about your brother or sister’s illness and the impact it’s having on your family. Below are some of the feelings young people have told us they had while their brother or sister was ill. Perhaps you recognise some of these in yourself? numb or shocked at the news of your sibling’s diagnosis scared or anxious about the future, for your sibling and for you and your family angry because someone you care about is ill, or you might even feel angry at them for being ill sad about what’s happening and what it means for your family stressed, which can manifest itself in all sorts of ways, like not being able to concentrate, not being able to sleep, or getting physical symptoms like headaches and nausea guilty for being healthy, or guilty for not being able to help your brother or sister lonely, if you feel like no one understands what you’re going through jealous of the attention your sibling is getting, or jealous of your friends who are able to carry on their lives as normal embarrassed because your sibling looks different, or awkward if you feel unable to answer people’s questions pressured to hide your own feelings so you don’t burden your sibling or parents any further worried about your own health or the health of your other loved ones All of these are perfectly normal feelings, and everyone will react to their situation in different ways. You might feel all, some or none of these, and that’s totally fine. Talk to your parents or carers and friends so that they can understand how you are feeling and help you. You can also get in touch with us for a chat - The Aplastic Anaemia Trust is here to support all the members of your family. On this website you can find out about how we can help support your emotional wellbeing. When Ben was in hospital, I felt extremely guilty. I felt bad that I was able to go out and live my life when he was stuck in a hospital bed, especially at a time when his life was just beginning. I felt guilt from seeing him in pain and knowing there was nothing I could do to help. I also felt sadness and anger that something like this had happened to someone I loved and who didn’t deserve it. I would have swapped places with him if I could. - Amy, aged 19 when her brother was diagnosed Changes to everyday life Treatment for aplastic anaemia will mean changes to your family life. Sometimes these changes will feel easy but sometimes they might make you feel upset, angry or confused. The impact that this has had on my family is far reaching. As a young adult, I found myself needing to be supportive to different family members and changing my approach depending on the person’s need. My mum wanted to talk and explore the emotional aspects of having a son who was ill, whereas my dad wanted to rationalise and process his understanding of the situation through our conversations. Nick just really wanted me to be normal and pick on him or tease him and make him laugh. - Laura, aged 25 when her brother was diagnosed Hospital visits and stays Your brother or sister will have lots of visits to the hospital and might have long stays there while they are having treatment. One of your parents or carers will always have to go with them if they are still a child, and they might often stay overnight with them at the hospital. This might feel tough on you if you are still living at home – partly because you won’t see them as much as usual and partly because your parents or carers have to give more attention to your brother or sister than to you. You might suddenly have other friends or relatives picking you up from school or college, or cooking your meals more often. You might feel unsettled by this or you might feel like this is a huge treat. If you already live away from home, you might not notice as many of these changes on a day-to-day basis, but you might still feel unsettled by what is happening to your family. During this time, you might see if you can help out a bit more with jobs, errands or looking after younger siblings, to help take the pressure off your parents or carers. You could also help your brother or sister by taking them games or books to keep them busy in hospital. Often, just being there for them can be a tremendous help. It was very hard when Sandy was in hospital but I knew, given the way he was, that it was the best place for him to be. I was obviously very upset that there seemed to be no end in sight or any answers to what was happening, and that was really the hardest part – not knowing what exactly was going on. When he was in the hospital it was tricky to help him. He was so worn out with the procedures and the drugs that he mostly wanted to rest, but I think just being there with him – even just being in the same room watching TV – did help him. I eventually had to go back up to university, which made it much harder as I couldn’t get to see him as often as I would have liked to.- Euan, aged 18 when his brother was diagnosed The main thing I did to help Ben was trying to keep him happy and cheer him up when I could. When I used to visit him in hospital, I would try to make his day a bit brighter by making him laugh or being there. When Ben was at home, I would sometimes take him to his blood transfusions or even little things like just get him another glass of water or something to eat. The advice I would give is to make sure you go and visit when you can – it makes such a difference to their day. You also have to try and be strong. It’s so hard to see someone you love in pain and so unwell, but you have to trust they are in the best place for them, so stay positive.- Amy, aged 19 when her brother was diagnosed Isolation Some medicines and treatments mean that your brother or sister’s immune system is quietened down for a while. This means their body isn’t able to fight off infections as well as it would normally. It is therefore really important that they don’t catch any infections or viruses during this time. The best way to do this is through isolation. This means spending time away from other people, and keeping things around them very clean. This can be a very lonely and boring time for them, and you might feel the same while you are missing them. If they are isolating in hospital, they might be allowed some visitors. Their medical team will tell your family how many people can visit and when. Always check with your sibling and the hospital before you go and visit, in case it’s not quite the right time. If you are allowed to go in, you might have to wear ‘personal protective equipment’ (PPE) like a mask and apron to make sure you don’t spread any germs. I stayed ‘close’ with Ben when he was in isolation by texting him and checking in (even though he rarely checked his phone as he was too ill) or telling my parents to pass on messages when they were at the hospital. I think the main way I stayed close to him was by making things easier for my mum, who was always there for him, in ways like keeping the house tidy, looking after the dog, and picking her up from the station, as I know he would have appreciated that. - Amy, aged 19 when her brother was diagnosed We would play a lot of video games together, which I think he really enjoyed, and a bunch of my friends and his friends would play with us too. From early on we were in a ‘bubble’ together, and we both started on a couple of woodworking projects in the garage. Mine failed atrociously, and he must be on project 20 by now! - Euan, aged 18 when his brother was diagnosed Here are some other things you could do to help if your brother or sister is in isolation: Keep in touch through text, social media and video calls if you are not allowed to see them. Keep a notebook of funny or interesting things that have happened and take lots of photos – you can share these with your brother or sister when you are allowed to visit them, or via a video call. Ask if they need anything that you can help with – things to do, work from school, something to eat, etc. Changes in your brother or sister While your brother or sister is having treatment for aplastic anaemia, you might notice some changes in how they look and how they are. These changes are usually the side effects of medication and treatment they have been given. This might feel very strange, but try not to worry – they are still the person they were and you are still you. Depending on what treatments they have, here are some things you might notice: They are extra tired and might even need to stay in bed a lot of the time. They lose some of their hair or get extra hair on their bodies. They have a tube attached in their chest and perhaps also in their nose, so that it’s easy for the doctors to give medication and take blood for tests. They don’t always fancy eating much or they don’t like the same foods as they did before. They put on weight or look a bit ‘puffy’ Ben did lose all his hair. I found this very upsetting as it knocked his confidence. I remember him saying once when looking into the mirror, ‘I don’t even recognise myself anymore’. It was hard to see as he looked like a completely different person and not like my big brother. - Amy, aged 19 when her brother was diagnosed All these side effects are normal and usually only temporary, and some of them might not even happen for your brother or sister. Remember that they might be feeling down about these changes, so try to be kind, and try to concentrate on the things that are still the same. Talking about your brother or sister’s aplastic anaemia It is important to keep talking with your family and close friends about what is happening. While you might not want to ask for help because it’s not you who is ill, you still have a lot of changes to deal with and need support too. Finding answers You might have lots of questions, and it’s important that you find out the answers from people you trust. Searching online won’t always give you the right information, and it might leave you feeling even more worried than before. Always ask a family member, or one of your brother or sister’s medical team. You can also look on the Aplastic Anaemia Trust website for information on different treatments, and advice on living life with aplastic anaemia. Talking with your parents or carers Remember that your parents or carers will probably also be feeling tired, stressed, busy and emotional at this time. They have a lot to get used to as well, and they might not always say or do things in the best way. Sometimes you might need to have courage and take the first step to talk to them or ask a question. Don’t feel that you will be giving them extra things to worry about. It is usually best just to be open and honest so that you can work things out together. My advice would be to talk to your friends, support and spend time with your sibling (even just being there in the same room), and help your parents. They will be doing so much that you won’t be seeing, and it can at times be more draining for a parent than a sibling. We were all in it for Sandy, and for our mum as she struggled the most with it, so we really wanted to band together around them and help in any way that we could. We helped with even very small things like chores around the house so that Mum could direct her time and effort into the research she was doing around the illness. - Euan, aged 18 when his brother was diagnosed You could also ask your parents or carers for some one-to-one time doing something together that you enjoy. It could do you and them the world of good to spend some time away from the situation doing something ‘normal’ together. Talking with your brother or sister You might not know what to say to your brother or sister to start with. You might worry that talking about their aplastic anaemia will upset them, but you can’t pretend it’s not happening. Ask them how they are and if they want to talk about it. Ask if there’s anything you can do to help. Listen to them and help if you can. If they don’t feel like talking, give them space and don’t pressure them. Let them know that you will be there for them when they are ready to talk. Remember that they are still the same person they were and you are still you. Try to do ‘normal’ things with them as much as they can, and talk about the same things you always did. Watch a film together or play board games or computer games if they are not able to do many active things at the moment. You could also help them stay connected with their friends as much as they want. Let them know all the news so they still feel part of things. Talking with your friends, school, college, university or workplace It might help you to talk to your close friends about any worries or upset you are feeling about your brother or sister’s illness. Your friends might not know what to say to you and they might be worried about upsetting you, so you might sometimes need to make the first move and let them know it’s OK to talk about it. Talking to my friends helped. I wrongly kept them in the dark for a while about what was happening as I wasn’t looking for pity, but when I opened up to a small group it really felt like a big weight was off my shoulders. And it also helped them to understand why I might be having bad days every now and then. I talked to a very small portion of my friend group – it was a very sensitive topic so only my closest friends needed to know. It really helped a lot having them know what was going on. They just listened – they didn’t try to provide answers or solutions. - Euan, aged 18 when his brother was diagnosed Focus on your own feelings and make sure you aren’t telling friends anything too private about your brother or sister. This applies to what you say on social media as well as when you talk to friends in person. People at school or college might have lots of questions about what is going on. Talk with your family beforehand and have a think about what you might say. If people make unkind comments about your brother or sister, tell a member of staff and talk to your parents or carers about it. If you are finding it hard to concentrate on your work at school, college or university, talk to your teachers, and tell your parents or carers. They will all be able to work together to make sure you are supported to keep going with your learning while all this is happening. If you work, talk to your employer, and they will be able to make sure you have the right support and flexible working arrangements in place. My friends were helpful by cheering me up, getting me out the house and providing a sense of normality. They also always let me stay or come for dinner if they knew I was alone when my mum was at the hospital. They have also all helped me share awareness of aplastic anaemia on social media. - Amy, aged 19 when her brother was diagnosed It's Good to Talk In this video, young people who have had aplastic anaemia, Dan, Elin and Henry, and Dan's sister Lily share what communicating as a family was like: (You can watch the rest of this video series here.) Talking to someone else You might find it helpful to talk about your feelings to someone different, and the hospital looking after your sibling might have someone you can talk to there, like a counsellor or a psychologist. They will understand that having a brother or sister in hospital might be difficult for you, and they will be able to help you find ways to make it feel easier. Ask the hospital team, or ask your parents or carers to find out about this, if it’s not something you have already been offered. Being a stem cell donor If your brother or sister needs a stem cell transplant, you might be able to get tested to see if you can be the donor. This is a big step and you might feel very excited and nervous at the same time. Getting tested A doctor or nurse will usually take a blood sample from a vein in your hand or arm. Then they will send the blood sample away to be tested, to see if it is a match for your brother or sister. It might take a couple of weeks for the results to come back. You might have mixed feelings at this time – worry about not being a match and not being able to help your brother or sister in this way, and worry about going through the procedure if you are a match. My parents spoke to me about providing a tissue sample when I was approaching the end of the school summer holiday. As a teacher, I wanted to prepare my school for the possibility that I might need time off work, in the event I was a match for Nick. I felt that explaining to staff what was happening was really difficult because no one understood this rare blood disorder. Although I was supported at work, I was worried that I would be judged for taking time off for something that didn’t sound serious. With leukaemia, it commands a level of sympathy and empathy, which you just don’t get with aplastic anaemia. I felt an overwhelming pressure to educate those around me, to prove the seriousness of this diagnosis and what it meant for my family. I felt a pressure to justify why I might need to go home, instead of being at work - Laura, aged 25 when her brother was diagnosed Talk any concerns through with your family, as they will be thinking about all of these things too. Your parents or carers will only need to give their permission (consent) for you to be tested if you are under 16. If you are older, you will need to give consent yourself, but talking to them might still help you to make your informed decision. It is also good to talk to the doctors and nurses and ask them any questions you have. Keep a notebook of things to ask, as things will often pop into your head at funny times. This will help you to keep track and remember to ask them next time you are at the hospital. I felt very glad to get the test to see if I was a match for Ben. I would have done anything to have helped him if there was a chance of getting him better. When I had the test, I remember having blood tests and various other tests such as an ECG [electrocardiogram] to check my heart. I think we had to wait a couple of weeks or so for the results. - Amy, aged 19 when her brother was diagnosed If you aren’t a match, what happens next? I had no doubts about having any tests done to see how I could help. I had a very small blood sample taken at the hospital, which was quick and painless. When I found out the results, I was completely gutted, and so were my mum and dad. We knew that there was always a chance we wouldn’t be a match, but I really hoped I would have been able to help. - Euan, aged 18 when his brother was diagnosed The most important thing to remember is that it is not your fault if you are not a match, and there is nothing you can do about the results. While you have a good chance of being a match, it is still only one in four, meaning that you are still more likely to not be a match. Your family might also show their disappointment that you are not a match, and you might feel like you have let them down. However, they will also know that it is not your fault, and they will be disappointed at the situation rather than with you. Try not to feel too upset or frustrated. There are lots of other ways you can help your brother or sister, by being there for them and helping them through their treatment. The hospital will now look for other donors who might be a match. This might still be a member of your family, but it is more likely to be someone your brother or sister doesn’t know. This is fine – the important thing is that they are a match. You might even decide you’d still like to be a stem cell donor for someone else. You can register on the donor list from the age of 16. Talk to your parents or carers and the hospital team if this is something you would like to think about. I didn’t think twice about being a donor for my brother. I would have done anything to help Nick and didn’t care what it would have meant for me. When I was asked to have the test, there were so many people in the room including my parents and Nick. If I was reluctant, it would have been hard to say no. It was great that the nurse encouraged me to go for this test on my own and checked when we were alone that I was happy to do this. She wanted to make sure that it was my choice and that I wasn’t feeling pressurised. It never crossed my mind to say no. I never felt reluctant or apprehensive.Being a donor wasn’t an alien concept. Representatives from Anthony Nolan had come into the school where I was a teacher and ran an assembly about having a transplant. They raised awareness about the importance of being a donor.I felt the weight of hope and expectation on my shoulders to be a match, especially as an older sibling. This wasn’t only an internal pressure – I felt it externally from everyone else. Even though, rationally, I knew that a match was unlikely, I was keeping everything crossed for a positive result. No one spoke about it during the time we were waiting for the result.The day the call came through, I was driving, and I knew instantly that it was the hospital. I pulled over and found out that I wasn’t a match. My first feeling was overwhelming disappointment and that I had let everyone down. I called my parents and told them, and although they tried to hide how they felt, I knew they were disappointed. I know that they were disappointed in the outcome and not disappointed in me, but it was still really difficult for everyone. Funnily enough, Nick handled it the best.I overcame the upset of being unable to help Nick in this way by flipping it. I thought of other ways I could show my support and help him. I helped in practical ways by batch-cooking for my family and spending time with Nick and making him laugh. I signed up to the Bone Marrow Registry, because although I couldn’t help my brother, I could be the reason that someone else gets that call they are waiting for.I actively raised awareness on social media about the difference you can make by being a donor, to encourage more of my friends and family to sign up. Even small things like setting up a donations page for my birthday to raise money for the Aplastic Anaemia Trust made me feel like I was doing all that I could to help in this situation.My advice to another young person would be not to stress about what you can’t control. Make the things work that are in your control and that you are able to affect positively - Laura’s story, aged 25 when her brother was diagnosed If you are a match, what happens next? If you are between 16 and 18 and you feel you have understood all the information you need to make your decision, you can give what is called ‘informed consent’. This means signing a form to say you agree to donate stem cells. Your parents or carers can sign this form too. If you are over 18, then it will just be you giving consent, but you should still keep talking to your parents or carers and the medical team about how you are feeling, and ask them anything you want to know about what’s happening. As part of giving consent, you might have a meeting with someone from the Human Tissue Authority (HTA). They will make sure that you understand what is going to happen and that you are making your own informed decision rather than being pushed into anything before you are ready. If you are a match but don’t want to donate your stem cells, nobody can force you to do this. It is important to talk through any worries or questions with your parents or carers and the medical team as you make your decision. When you are happy and have given consent, you will need to have some checks to make sure you are fit and healthy and OK to donate. These will include: talking about any illnesses you or your family have had and any medicines you are taking a physical examination, which will include things like your height, weight, temperature and blood pressure tests to check your heart a blood test to make sure there aren’t any viruses in your body a pregnancy test if appropriate, as you won’t be able to donate stem cells while you are pregnant After these checks, the doctors will be able to confirm whether you are OK to donate your stem cells. If they find a reason that means it’s not a good idea for you to be a donor, they will explain this to you. Donating your stem cells If you are under 16, your stem cells will be taken in a procedure called a ‘bone marrow harvest’. If you are 16 or over, you might also be given the option of a ‘peripheral blood stem cell harvest’. Bone marrow harvest You will probably go to hospital the day before it happens and have some final checks as you get settled. On the day, a doctor will give you a general anaesthetic, which means you will go to sleep and not feel anything while your stem cells are being taken. While you are asleep, the doctors will put a needle through your skin and into the back of your hip bones. The stem cells will be taken from the bone marrow inside your bones, which will take about an hour. You might feel a bit groggy and your back or hips might ache when you wake up, but the medical team will keep an eye on you and make sure you are recovering well. You should be able to go home again the day after. Peripheral blood stem cell harvest In this process, stem cells are taken from your blood rather than from inside your bones. To make this possible, you will need to have daily injections of a hormone for about a week before the stem cells are taken. This hormone makes the stem cells move from your bones into your bloodstream. When your stem cells are ready, they will be taken from you by a machine. You can stay awake while this is being done, reading, playing a game or chatting with your family, but you will have to stay on the bed or chair while you are attached to the machine. It usually takes around four to five hours and you should be able to go home straight afterwards. You might have to come in and do this again the next day if not enough stem cells were taken in the first harvest. After donating your stem cells After your stem cell harvest, you might feel tired while your body works hard to replace the stem cells that have been taken. You might need to take a few days off school, college or work, but this feeling won’t last for long. After being given their transplant, your brother or sister will need to spend some time in hospital and in isolation before they continue their recovery at home. Their body will gradually start making healthy blood cells and their new immune system will start to develop. As you see them getting better, you can remember that your stem cells have made that possible. My brother, Ollie, is very sociable and likes a party. He’s also the most organised member of the family. I was 20 when he was diagnosed with aplastic anaemia and, because I was away at university, I didn’t realise that he was ill. He was off school a lot, but he pushed himself to keep going. He even went to Amsterdam for his birthday. I do remember him being a bit quiet at points sometimes.I was taken by surprise at how serious aplastic anaemia was when he went into hospital for so long. I felt like I needed to be gentle with everyone. I helped him by visiting him, watching films together and giving him a break from our parents and their worrying!I’ve always been a bit scared of needles, so wasn’t looking forward to having a blood test to see if I could be Ollie’s stem cell donor, but not so scared that I didn’t want to do it. It was just a blood test, so it wasn’t bad. I can’t remember how long it took to find out if I was a match, but I know that I missed the first call from them because I was out on my bike, which my mum was angry about!When I found out that I could be Ollie’s stem cell donor, I felt relieved. I had an additional blood test to look for anything dangerous that would prevent me from being Ollie’s donor, and then because the first test was taken some time ago, I had to redo the initial blood test.After the blood tests, there wasn’t really anything for me to do until it was time for me to donate my stem cells to Ollie. I went up to Birmingham to stay near the hospital. I had to inject myself with something to stimulate stem cell growth twice a day for about a week. I was shown how to do this by a doctor when I had my blood tests and then again by a nurse. It wasn’t something I was looking forward to doing and it did make me feel uncomfortable, but it was actually quite easy.On the day, I went into hospital and had the stem cells filtered out of my blood ready to give to Ollie. My dad came down with me but left me alone for most of it. This process took around seven hours and while it was happening, I mostly listened to podcasts, except for when my dad came back to bring me lunch. I was home by the afternoon.Afterwards I felt fine and didn’t require any recovery or follow-up appointments. Ollie’s transplant went well, and he was allowed visitors the whole time after transplant day. This helped me stay close to him when he was in isolation. Ollie is doing well and is now at university studying engineering and enjoying life.My advice to another young person who might be asked to be a donor is don’t worry. It’s fine, well worth it and the hospital staff look after you! - Will’s donation story, aged 20 when his brother was diagnosed Looking after yourself Whether you are a stem cell donor or not, keeping yourself healthy and happy will mean you’re better able to help your brother or sister and the rest of your family. Sometimes it felt like all the conversations we had as a family centred around my brother, which can feel intense. It’s OK to do things that aren’t connected to the experience of having a brother in hospital. Being away from the situation protects me too, and I know that this distance helped me to be there for my family in a more helpful way than if I was physically back at home. Sometimes the support that everyone needed was draining for me and, looking back, I probably overcompensated because I wasn’t living at home. I felt guilty for being far away and not doing enough. It’s easy to fall into this way of thinking. It’s important to look after yourself first, so you can look after those around you better. - Laura, aged 25 when her brother was diagnosed The best advice I can give is to be brave, or as brave as you can be, but remember that when you need someone, vulnerability is also bravery. When a sibling is ill, it’s so easy to put your feelings to one side as you think they are futile compared with what your sibling is going through. You don’t want to give your parents another thing to worry about and you almost feel selfish, but you are still important too and you will, of course, have your own worries and fears. Aplastic anaemia affects the whole family, so make sure you speak out and get the support you need, whether it’s to family or friends or a counsellor, but don’t keep it to yourself because you’re allowed to feel everything you are feeling. - Amy, aged 19 when her brother was diagnosed Here are some things to focus on to help your own wellbeing: Keep doing the things you enjoy. Eat healthily. Get plenty of exercise. Get plenty of sleep. Talk and ask for help when you need it. Write a diary or keep a notebook to help understand and manage your own feelings. Going to see Ben made me feel better sometimes, as just being able to see him and being near him helped. If I couldn’t go and see him, I would often be with friends or family to keep myself busy and distracted. I also used to email various organisations or spread awareness on Facebook. This used to make me feel better, as it made me feel like I was helping or trying to make a difference. - Amy, aged 19 when her brother was diagnosed Support from the Aplastic Anaemia Trust We realise that a diagnosis of aplastic anaemia for your sibling can be a difficult and worrying time for you, and we are here to help. The Aplastic Anaemia Trust have an incredibly welcoming and supporting closed Facebook community group, which you can join here. The Aplastic Anaemia Trust can also put you in contact with other young adults whose siblings have had aplastic anaemia. This can provide you with support from someone who understands what you are going through. The Aplastic Anaemia Trust helpline is also available for anything you might want to talk about, here's how to get in touch. Your brother or sister’s future after aplastic anaemia It might be hard to imagine while your sibling is very ill, but they are likely to go on to lead a full, happy and healthy life after their treatment for aplastic anaemia. Ben is much better now and looks so much stronger in himself – he is starting to look like Ben again. Considering everything he has been through, he is amazing. He has now moved into a flat with friends and is doing really well at work. Hopefully when Covid is over, Ben can live the life he wants and make up for lost time. - Amy, aged 19 when her brother was diagnosed They will have ongoing check-ups once treatment has been completed, so that any problems can be picked up quickly. Doctors will look at things like weight, pain, kidney and liver function, and fertility if and when this becomes relevant. They might also need to take ongoing medication. Any continuing side effects or issues developing later on are often related back to the medication they received during their treatment, particularly if they have been through conditioning therapy and a stem cell transplant. Sandy is really good now! He’s not ‘cured’ but he manages it really well. His numbers are good at the moment and he’s got a lot of his pre-illness energy back, which is incredible to see. He’s put a lot of weight back on, he’s active, and the majority of the time we forget about his aplastic anaemia as he is a completely changed character compared with what he was even a year ago. - Euan, aged 18 when his brother was diagnosed Fundraising for the Aplastic Anaemia Trust If your brother or sister has aplastic anaemia, you may feel like you want to do something different to help other people like them. One way to do this is through fundraising for the Aplastic Anaemia Trust. The money will go towards research into aplastic anaemia and how to treat it, and also towards raising awareness about this illness so others can help too. Taking part in some fundraising together as a family can help you to feel closer together after a difficult time. For example, some families like to mark the anniversary of a stem cell transplant (sometimes called a ‘re-birthday’) by doing a sponsored walk or cycle together on that date each year. You could also talk to your friends about aplastic anaemia and find out if they would like to get involved. Perhaps you could arrange a sponsored sporting event, a rebirthday celebration or a coffee morning? There are lots of ways you can get involved, and the team at the Aplastic Anaemia Trust are here to help you. Take a look at the fundraising ideas on our website to get you started. Manage Cookie Preferences