Frequently asked questions
Coming to terms with amyloidosis
How do people come to terms with a loved one being diagnosed with amyloidosis?
It is really difficult to find out that a loved one has been diagnosed with any disease. There are so many emotions associated with this and it’s likely to be a shock. With this condition, there are the added factors that there isn’t a cure at present and also the potential that it is genetic, depending on what type of the disease you have.
These factors may impact on the shock of the diagnosis and you may experience a range of feelings: guilt, anger, sadness, fear or hopelessness. The most important thing is that you give yourself time to absorb the information, to feel whatever feelings come up for you and to recognise that your loved one may have a different set of feelings. You’ll be having your own emotional journeys with it impacting you both perhaps slightly differently. Your emotions will also change over time and you might be on different parts of this journey, and that’s okay.
When we’re adjusting to a diagnosis for ourselves or our loved one, it is a grief process and a grief response. So go gently with yourself and your loved one. Show yourselves compassion and look after these emotional needs that might be quite difficult to manage at times. Keep communicating, be open and honest.
Your loved one might be the sort of person who is not very open about what they’re feeling or thinking and they might withdraw. This is often the most difficult response to manage as a carer or loved one but try to respect their space, let them know you’re there for them if they need you and when they’re ready. Continue to look after your own wellbeing, including your emotional wellbeing.
You can also both benefit from speaking to somebody else because often when we’re talking to our loved ones about a situation we’re partly filtering our own feelings and thoughts so that we don’t upset them in any way, in order to protect them. It’s really important that you can get some outlet for those feelings and thoughts that you might be having that you don’t feel comfortable to share with your loved one and that’s okay. Speaking to a close friend or family member that you can trust is really important for your wellbeing.
It is also really important that you both have distractions from focusing solely on the diagnosis because otherwise it will take over your lives entirely. So make sure that you still do the activities that you’d usually do together, even if they’re simple things like going for a walk or cooking a nice meal. When the time is right for your loved one, you may both want to make some plans for your next steps and set small goals. For example maybe around telling family members and friends. Take your time and make sure that you’ve adjusted to the information yourselves first.
What kinds of adjustments do families face after an amyloidosis diagnosis?
It is important to try not being too rigid about your usual routines. For instance, if you usually holiday in a way that now feels unmanageable, rather than giving up on holidays think about different ways and ideas instead that could give you a different experience.
Often when we feel restricted or limited by illness, we may start to say “well, I (or we) can’t do this anymore.” While that may be true in some instances, there are likely things that you could do differently which would still bring pleasure and meaning to your lives. Consider different ideas and options for your future as a couple and as a family.
These decisions around any life changes are not easy or quick and you must give yourselves time to fully think things through together. Gather all of the information that you can from your healthcare teams and any other sources. Write down pros and cons or risks and benefits in order to make a balanced and fully weighed-up decision.
Remember this is not all your responsibility and you can seek help and support with these aspects from friends, family and professionals — whatever you need to help get through this difficult time.
How do I prepare for lifestyle changes following my amyloidosis diagnosis?
Having to accept amyloidosis into your lives may have led to significant changes for both the present and future. It’s normal to be concerned about these but there are ways to cope with and adjust to this impact on your lives.
You and your loved one will be going through a process of adjustment, acceptance and managing change. You may have ups and downs along this journey, and will not always feel like you’re making progress.
Feelings of loss in relation to illness are common. There’s often a discrepancy between life before and life after an illness or a worsening of one. There is coming to terms with role changes and potentially having to give up or adapt things such as work, which can often form important parts of our identity as individuals, couples and as families.
There’ll be some grief involved in adjusting to chronic illness and this grief process will take time. However, often when things feel difficult we focus only on the aspects of our lives which are going badly or are a challenge, and the aspects of ourself which we are limited in.
So we’re all made up of lots of different characteristics and factors, and some of these will not be changed by illness, so where your loved one is restricted, try to help them make slightly different choices which will still fulfil their values so that they can continue to live a meaningful and rewarding life.
So for example, if they need to change or adjust their work to cope with the impact of the illness, think about what else they could do which fulfils the same values that their chosen career did for them. It may be that they value connecting with others, fixing problems or finding practical solutions. They may be able to replace some of this meaning with something voluntary or a new hobby, which will help in some ways to balance some of the loss of self-esteem which can result from giving up work.
How do I talk to my family and friends about my diagnosis?
One of the things that people raise as the most difficult factor is telling family and friends about their diagnosis. This is a really tough challenge to face.
Once you’ve gathered all of the information and understood it, given yourself time, you may want to think together about who you need to tell first and agree on when you feel ready.
Think about the environment and the mode of communication you’ll be using, and make careful decisions around this. Consider what questions you might get asked so that you can be prepared with some answers.
Ultimately, you cannot control the whole of this conversation or how others respond. So remember that you’re not responsible for everyone else’s feelings. Allow people space for their own feelings, listen and support each other. It is okay to share that you’re frightened, upset or anxious.
It is best to be as open and honest as possible with loved ones. When telling those not as close, for example work colleagues, consider how much you feel comfortable sharing and don’t feel you have to go beyond that. Everyone is different in how open or how private they want to be and this may also depend on your readiness for telling people.
Can I still go on holidays after being diagnosed with amyloidosis?
The short answer is usually yes, you can. Provided your diagnosis happens at a relatively early stage, it normally takes many years for the condition to reach the point where you wouldn’t be able to go on holiday. In the early stages of the disease people tend to be reasonably fit and well, unless there are other conditions involved. Many patients have plenty of good holidays following their diagnosis.
Speaking from their own experiences, our trustees strongly encourage you to go on holiday while you can, to do the things you’ve always wanted to do and enjoy yourself as much as possible. Some write out bucket lists and focus on the most challenging items first, leaving the gentler ones for later when the condition has advanced and symptoms get worse. It is very important to sit down with your loved ones early on and let them know what you’d really like to do.
When going on holiday following a recent diagnosis it isn’t necessarily important to let your medical team know but as your symptoms progress over the years, you should make it more routine to let your medical team or doctors know that you’re going to certain places for a holiday.
Also make sure you have the appropriate medical or travel insurance and be very up front when filling out the forms that you have amyloidosis and what that means for you specifically. You’d need to let them know if you have a heart condition, or if you’ve had a pacemaker fitted, any postural problems you might have, etc. It is reassuring to know that you have the appropriate medical cover and will be able to get treatment should you become unwell on holiday, especially when going abroad.
Will I have problems getting mortgages and insurance with an amyloidosis diagnosis?
Having an amyloidosis diagnosis will not stop you from getting a mortgage or insurance but you may have to tell them more about your condition and it may affect premiums in some cases though from what we’ve seen this is not often the case. The most important thing is to be open and honest when applying for mortgages or insurances.
How can I address intimacy issues in a relationship that emerge from living with amyloidosis?
Another area that people find really difficult to talk about is intimacy and sexual intimacy in particular. Chronic illness can impact on intimacy in relationships for many different reasons and if you feel that your intimacy and / or sexual intimacy is affected, consider exactly why this is. Is it physical limitations and change in function, is it time or lack of time, or is it that the illness has taken all of the focus and therefore neither of you are feeling like being intimate?
This can often lead to feelings of disinterest and a belief that you’re unable to perform sexually. However, it is worth speaking to your healthcare provider for advice and asking about any relevant referral to services which may be able to help.
Don’t suffer in silence. Often many people just keep it to themselves because they feel embarrassed or ashamed, but it may be that there’s help out there for you. There are many factors which contribute to sexual function, and in the field of psychology, the brain is considered the most important sexual organ. What we think and feel will significantly impact our physical responses and function. Feelings about yourself and the illness may be, in part at least, driving your physical limitations.
Consider all of the different ways that you can be intimate and talk about this together with your partner. Sometimes it’s helpful to take the pressure off and just build intimacy back in slowly. Create time and space for intimacy including activities that you enjoy together which continue to meet the needs of you both as a couple. These kinds of activities that we do together with our partners sustain closeness and that helps build intimacy.
There might be certain caring responsibilities which impact on feelings of intimacy. Consider whether you need to have your partner involved with these or whether you could do them independently with any aids that are available or with external support.
Of course, there may continue to be difficulties in this area, especially as the disease progresses. A loss of sexual intimacy may be something that you both have to learn to adjust to, along with other losses in relation to the illness, but try to sustain other forms of intimacy within your relationship.
How do I talk about death, dying and funeral arrangements with my loved ones?
Another area that people find a real challenge is talking about death and dying. Death is the only certainty in life, yes as humans we often find it incredibly difficult to talk about.
It’s often much more scary when we avoid it and don’t discuss our needs and wishes. Really the only time we have control over this area of our life is preparing for it in advance. So think about your own wishes around death, dying and funeral arrangements. Give yourself some space and time to either think about this alone or with your loved one first.
When you feel ready, try to be open and honest about the needs and to talk things through. Focus on the positive reasons for the conversation, of wanting to have some control and to have your wishes met. Family and loved ones are likely to respond much better to this type of approach.
Take time to write things down. Think about where and when you would have these conversations rather than just springing them into a family gathering out of the blue. It may be easier to have brief conversations on a one-to-one or a small group basis with separate parts of your family and friends before bringing them together.
Remember that some members will find it much harder than others and some may be completely avoidant with the subject. Just remember that that’s okay, because as long as you’ve shared your wishes with the rest of your loved ones, those that can cope with it more and are less avoidant will take the reins even if there are one or two members who cannot manage these conversations.
How do I receive medication for my condition?
When we think about the medication that we need, first of all we need to confirm the amyloidosis diagnosis. Usually a patient will go to their GP with symptoms such as breathlessness, swelling in their legs, pins and needles or perhaps altered bowel habit. They will then be referred on by their local hospital to the National Amyloidosis Centre. There they will arrange various investigations to confirm the diagnosis.
Once the diagnosis has been confirmed, they will discuss supportive treatment. So for instance, if a patient has constipation, then they can access laxatives from their GP. There are also medications that are disease-modifying which actually impact on the underlying cause of the problem. The National Amyloidosis Centre will prescribe those medications.
If you suspect that a medicine is making your loved one sick, then it is definitely worth jotting down the symptoms that you think may be attributed to the medicine and discussing it either with your local clinician or with the National Amyloidosis Centre. It is sometimes difficult to determine whether it is the medication or the underlying disease that is causing the symptoms. So it is worth jotting down the symptoms so that you can discuss it in more detail.
How do amyloidosis symptoms progress over time?
Symptoms may progress over time. Amyloidosis is a progressive condition but it varies depending on the type of amyloidosis how quickly the symptoms may progress. In some patients symptoms make progress over a matter of months, while in other patients it may take many years for the symptoms to progress. So everybody is different.
It is important for the patient or carer to track the symptoms and they may find it helpful to use a tracker app detailing what symptoms that they have on a weekly or perhaps monthly basis. That can then give them a sense of whether symptoms are indeed progressing. If that is the case, then they can contact their GP or the National Amyloidosis Centre to discuss it further.
Inheriting amyloidosis
How does hereditary amyloidosis work within a family?
Again this depends firstly on the type of amyloidosis. To take ATTR amyloidosis for instance, there are two types of transthyretin TTR amyloidosis. The wild-type is acquired and is therefore not hereditary; there is no chance of you passing that on to your children. However, with hereditary TTR amyloidosis, there is a 50:50 chance of passing the variant on to your children, whether they’re male or female.
As this is a hereditary disease, there is a possibility of your children inheriting the variant. It is known as an autosomal dominant condition which means there is a 50:50 chance of inheriting the variant from your parent, whether you’re female or male.
If you are diagnosed with hereditary amyloidosis and your child does not inherit the variant, they cannot develop the disease and they cannot pass it on to their own children. However, if your child does inherit the variant from you, they can pass it on to their children even if they never develop the disease themselves.
Hereditary ATTR amyloidosis also has what is called variable penetrance. What that means is that someone may inherit the variant from their parent, but they may never go on to develop the disease. Therefore, if one is found to have the variant, the National Amyloidosis Centre will provide screening for the development of amyloidosis, particularly within 10 years of the parent’s age at diagnosis.
How do families get genetic testing for ATTR amyloidosis?
If there is hereditary amyloidosis within the family, once a person who is diagnosed reaches adulthood the National Amyloidosis Centre (NAC) can arrange genetic counselling for other members of the family.
Genetic counselling helps each family member weigh up the options available in terms of the pros and cons of having the genetic testing performed, what that will mean for them and for their family and whether or not they want to pursue the testing.
It is important that everyone feels they have the right to either have the genetic testing performed or not. It is very much an individual choice.
How do I talk to family members who may have also inherited amyloidosis?
One of the things that people raise as the most difficult factor in this illness is telling family and friends about their diagnosis. With hereditary amyloidosis, there’s the added burden of telling family due to concerns that it may have been passed on to them.
This can be extremely worrying and difficult to manage. It is likely to raise feelings of guilt, even though you have had no control over this outcome and are not to blame in any way. Guilt in this scenario is a misplaced emotion because you’re not responsible for this situation. However, we often feel a sense of responsibility even when we know something isn’t our fault.
Once you’ve gathered all of the information yourself and understood it, given yourself time, you may want to think together about who you need to tell first and agree on when you feel ready. Think about the environment and the mode of communication that you’ll be using and make careful decisions around that. Consider what questions you might get asked so that you can be prepared with some answers.
Ultimately, you cannot control the whole of this conversation or how others may respond. So remember that you’re not responsible for everyone else’s feelings. Allow people space for their own feelings, listen and support each other. It’s okay to share that you’re frightened or upset or anxious, and it’s best to be open and honest as much as possible with loved ones.
When telling family members who may also have inherited the condition, ensure that you have all of the information and resources to hand about them getting tested and anything else that you feel they need to know. Remember that they may need time and space to think this through. You will have had some time to process this information, but they will not as yet.
Try to respect their decisions which might not always be the same as yours. Also remember that you’ll have many more opportunities for conversations as time goes on. This is just the start, so try to take things slowly.
Plan to do something comforting or nourishing after this conversation and to express your feelings about it either to a spouse / partner or to a friend. Look after yourself with compassion. Remember that life has put you in a very difficult circumstance which you’ve had no control over.
Be gentle and kind to yourself and look after your wellbeing. Maybe go for a walk afterwards, do some mindfulness meditation or an activity which takes your attention away from these difficult emotions.
When telling those not as close, for example work colleagues, consider how much you feel comfortable sharing in advance and don’t feel you need to go beyond that. Everyone is different in how open or how private they prefer to be. You might not feel ready to share too much at this point in time so don’t be pressured to do so.
Is there any specialist help available on the NHS for families dealing with hereditary amyloidosis?
You may wish to discuss the genetic implications for your family when your loved one has been diagnosed with hereditary amyloidosis. This is a personal choice.
The NHS does offer genetic counselling to help people weigh the pros and cons of having the test done. There are genetic counsellors across the country who can provide you with that expert help. It involves either a simple blood test or a sample of saliva to look for the genetic variant associated with hereditary amyloidosis.
Caring
How is care provided at the National Amyloidosis Centre (NAC)?
All patients with suspected amyloidosis should be referred to the National Amyloidosis Centre (NAC) in London. Once the diagnosis has been confirmed, then a treatment plan is made with the local clinicians. The ongoing treatment is provided by the local team. Patients will then be followed up by the local team and also on a yearly basis at the National Amyloidosis Centre (NAC). So it is a combination of local support and support from the NAC.
How are all the different healthcare professionals involved in caring for an amyloidosis patient coordinated and how does long term monitoring work?
Your loved one is likely to be looked after by a multidisciplinary team. This means that there are many doctors, nurses, physiotherapists and occupational therapists involved in their care, not only locally but nationally as well.
All of these remote healthcare professionals work together to look after your loved one and are in contact with the local team. Using the multidisciplinary team meeting, your response to treatment is carefully monitored along with any progression of the disease that’s noted so that they can help at each step of the way in terms of effective and supportive treatments. This is done between the National Amyloidosis Centre and a network of centres across the UK.
You may wonder who determines the prognosis of the patient at each stage of their journey. Each patient is different in terms of whether they respond to treatment or whether they progress in their disease and their symptoms. This is monitored by the NAC as well as the local clinician and they work closely to monitor each stage to determine whether treatment should continued or changed or indeed discontinued if it’s not helpful anymore.
What local & home care is available to amyloidosis patients?
There are options to get treatment locally. Happily, home care is now available to people living with amyloidosis whereas before one did always have to travel to the hospital for treatment.
Of course there are some treatments and procedures that still require visiting the hospital but under the care of their local team and with guidance from the National Amyloidosis Centre (NAC), patients can now receive treatment in the comfort of their own home, even blood tests.
What kinds of questions should I ask my care team?
When you attend appointments with your loved one, then there are likely to be questions you want to ask the care team. It makes sense to write down these questions ahead of time so that you don’t leave wishing you’d asked the question and you’ve forgotten to ask at the time.
Questions you might want to ask are:
- Are there any new developments in treatment of this condition?
- Are there any new clinical trials that your loved one might be eligible to take part in?
- What new supportive treatments are available for your loved one’s various symptoms?
- Are there any amyloidosis support groups available for patients and carers locally?
How do I take on the day-to-day responsibilities of caring for my loved one with amyloidosis?
In relation to caring responsibilities of your loved one, people will feel very differently about what they can or cannot take on. This is okay, and people can often feel pressured and responsible, but you’re not responsible for your loved one’s care needs. You need to think about what’s realistic for you, your relationship together and your family.
Everyone is different. Remember that you still need to look after your own wellbeing, live your own life and take care of any other responsibilities which you may have. There needs to be a balance of supporting your loved one and looking after your own needs.
Again, it may help to make lists of all the tasks which need to be completed, including household chores, which you might’ve shared previously. Identify which you want to do for yourselves and which you could get help with. Find out in advance what services are available to you, even if you don’t need them right now.
These initial decisions are likely to change over time as the illness progresses or as a carer’s abilities change with ageing and illness of our own. So notice when pressure is increasing and aim to reach out for additional help early, even if this is temporary. It’s much better to get help in place rather than to struggle on and try to have backup plans in place for emergencies, your own ill health or just when you need a break.
What symptoms should I look out for as a carer of an amyloidosis patient?
As a carer, the main symptoms you should look out for depend slightly on which type of amyloidosis that your loved one has. It may affect their heart, in which case they may notice breathlessness, or swelling in their ankles. They may also notice their heart racing, palpitations, or they may feel lightheaded when standing up due to a low blood pressure.
If the amyloidosis is affecting their nerves, then they may notice pins and needles, and find it difficult to button up a shirt, for example. If the amyloidosis is affecting the main nerves, then it can not only affect the blood pressure but also the gastrointestinal tract, causing problems with constipation or diarrhoea or both.
Can I still work after my loved one’s been diagnosed with amyloidosis?
Caring for a loved one is a huge part of life and it can be difficult to balance that with the stresses of a full-time job. Often, carers have to go part-time or give up working completely in order to care for their loved one.
You may become more dependent on a single allowance, which can feel stressful when you’re managing so many different things such as bills, doctor’s appointments and day-to-day care.
It is important to explain your situation as a caregiver to your employer. Some workplaces offer a flexible working schedule, ie working remotely a few days of the week, or reducing your working hours to manage your time. Other workplaces may offer employee assessment programmes.
Make sure to have these discussions with your employer so you know exactly what options are available to you. As long as you’re open and honest with them, most employers will be supportive. Also, if you are feeling stressed or just insecure about all this, it can be very beneficial to go to your GP and discuss it with them as well, to share your experiences and your worries with them.
Finding support
Are there any support groups for amyloidoisis?
Yes. There are a range of groups that meet regularly both in-person and online across the UK and Ireland. Some are for any type of amyloidosis, others are for specific types.
How do I get 1 to 1 support as a carer of someone with amyloidosis?
If you care for someone with amyloidosis and are in need of 1 to 1 support, you can contact us directly or contact your nurse or doctor at the National Amyloidosis Centre for advice and support. You can also contact your local GP who supports local carers within their region.
What can carers do to cope when looking after a person with amyloidosis becomes overwhelming?
As a carer it is really important that you consider the impact on your own mental health and wellbeing. It’s likely that you may feel overwhelmed. This is a natural response to a difficult situation which may be very physically and mentally draining. You may feel that you’re on high alert — feeling really stressed and pressured and perhaps noticing your heart racing, sweating, trouble sleeping and more regular trips to the toilet because of that feeling of stress.
Alternatively, you may feel that your body and mind go into more of a shutdown response where you feel unable to cope and you want to hide away under the duvet. In this response you might notice a lack of energy, fatigue, numbness and sometimes pain conditions are associated with this kind of response as well.
Both of these responses are parts of our body and nervous system’s ‘fight, flight, freeze’ response, where there’s something really stressful and the body and mind are trying to either get us ready to deal with it or to protect us from it. Even so they can feel really unhelpful at times when we’re trying to deal with things in a stable and regulated way.
There are some simple strategies that can help you to feel more in control at these points of overwhelm. These strategies will calm the responses in our mind and body, getting you back to more like your normal response in yourself. These include breathing strategies, grounding exercises and mindfulness—which you may have heard of. Taking a few moments out of the day to do these exercises is really important and valuable in keeping yourself well. You can find more information about mindfulness on the NHS website.
Other important aspects to keep yourself well are getting some exercise, even if its short bursts of movement; getting outside in nature for a walk, or any other activity your enjoy, as often as you can. Listening to music, connecting with people and doing something creative can also help, like a craft, cooking or gardening. These are activities which will restore your wellbeing. It’s also important to try and eat a healthy, balanced diet and have a regular sleep routine just to keep ourselves well.
As an amyloidosis patient or carer, is it helpful to seek out other patients or carers?
Being a carer of an amyloidosis patient is not easy but there is a lot of support for carers out there in the community. It is very important for carers to understand that there are other people out there that have been through what you’re going through and they’re ready to support you. Talking to carers with similar experiences can help you through the difficult times.
For patients, many find it extremely helpful to talk to somebody else who has the disease, especially on a casual, one to one basis. Hearing about their quality of life and the day-to-day experiences of having the disease informs not only how the carer can support the patient but also what the patient can do themselves.
Speaking to others who have been living with amyloidosis for years will give you encouragement that you’re not alone. They’ll be able to discuss the nitty gritty of the symptoms in ways that doctors simply can’t. In doing so you may even form bonds with others that provide mutual comfort, enabling you to be more at ease with your symptoms and to be able to share those experiences as you go along.
If you’re a carer and are concerned and worried about what you can do for support with the worry of a loved one having the disease, there is a lot of help out there for you to get a better understanding of the disease. Even if you can’t speak to someone in person there are many excellent websites and people you can ring for support and they will put you in contact with other carers that are in a similar position.
Your GP can also give you a lot of support via counselling sessions and these are highly recommended by our trustees. These can be provided for patients, carers and the extended family. It is important to be able to speak openly about your frustrations and questions rather than bottling them up. Sharing these things can take an enormous weight off of your shoulders and reminds you that you’re not alone. There’s always someone in a similar or perhaps even worse position.
There are also many excellent and helpful communities on social media, Facebook in particular has numerous groups for both carers and patients that you can join.
What mental health support options are available for those living with amyloidosis?
You find yourself benefiting from resources available on the Bridge website or Rare Disease UK. Sometimes it’s helpful to hear other’s stories, but go gently with this and just see what’s right for you. Make sure it’s at a time when you feel you can really benefit from these stories and take in the information. Try not to compare yourself with other’s stories, because this is a journey and you may be in a slightly different situation or at a different stage of the journey in terms of adjusting to diagnosis and life with this condition.
It’s perfectly normal to benefit from speaking to a professional, to seek some external support during this difficult time. Mental health support is available through your GP and they’ll know the specific services available in your local area because they do differ across the country. There are many specialists, clinical health psychology departments, usually attached to an acute hospital.
It’s also worth asking your amyloidosis healthcare team to see if they’re aware of any services available to you. If there isn’t a specialist service like that in your area, don’t worry because you can still access qualified mental health support through primary care services via your GP.
Of course, you can also access psychological support through health insurance if you have it. It may be worth checking with those, and you may want to fund some of this support yourself if you want to access a specialist of someone in particular. Have a look at our resources page for links.
What financial and social support is available to amyloidosis patients and carers?
Whether you’re beginning to think about reducing your hours at work or giving up work altogether as an amyloidosis patient, the main form of financial support that you can access is PIP (Personal Independent Payment). All you need to do is submit a form to the government who will then support you financially with some of the extra costs associated with living with amyloidosis.
The PIP form is quite arduous and long winded so it is good to ask for support from your doctors and get letters from the hospital, including the National Amyloidosis Centre (NAC). Some clinical nurses will even support you in filling out the form. It is also important to know that PIP is not means tested so don’t feel guilty about the fact that you’re claiming for benefit because you are entitled to that and its very important.
The main welfare benefit to help carers is the Carer’s Allowance. To check your eligibility for this you can visit the NHS website.
You also might be entitled to social care and support options such as home modifications such as stair lifts, hand rails or mobility aids. You can check the exact eligibility requirements on the NHS website. This can be very important and is worth looking into for example if you need your bathroom modified to have a walk-in bath or disability bath.
Another key benefit is that you can apply to have VAT taken off of anything that you buy to improve your home in supporting your disability.
As a carer it is also important to take the time to care for your own physical and mental wellbeing. In some cases you can explore respite care which is where your loved one is looked after by someone else which then gives you a respite to do something just for yourself.
There are also several transport benefits. If you or your carer use a car you can also apply for a Blue Badge which grants you many parking concessions to make getting to your destination easier. You can also apply for a disability railcard which entitles both you and your carer to travel together on the railcard for 1/3 off the price of a ticket.
One of the more fun benefits is a cinema card that costs £6.50 per year and gets your carer in for free anytime you go to the cinema.
What other forms of support are there for amyloidosis?
Following an amyloidosis diagnosis there are many challenges for the patient, the carer and the wider family. Fortunately there are many places that you can go to for support. In addition to Amyloidosis UK and the National Amyloidosis Centre remember that your GP is also a great source of support. Be sure to tell your GP about your diagnosis and your symptoms because having a well-informed GP can make all the difference to your condition in the longer term.
Your GP can also organise counselling sessions for you, your loved one or carer and the wider family. It is natural to have concerns about the impact of a hereditary amyloidosis diagnosis on your children and grandchildren and the genetic counselling provided by the NHS can be very beneficial.
There are numerous rare disease charities such and Myeloma UK (for AL amyloidosis) or Cardiomyopathy UK (for cardiac amyloidosis) that run support groups for patients and carers / loved ones and often have clinical experts that you can speak to. In Europe we also have the Amyloidosis Alliance which offers a broader spectrum of support for amyloidosis patients.