How do I cope with the diagnosis?

HLH can be difficult to diagnose and can be mistaken for other things. You may feel angry that it was not picked up earlier. You will probably feel confused as you will not have heard of HLH before and worried and scared about what it means. The consultant and the rest of the medical and nursing team are there to help you through this very difficult time. They will explain the disease and the treatment you will need.

It is very likely at this stage that you will not take in much of the information you are given. You may be in shock and find it hard to function as normal. Do not worry if you have not asked all of the questions you meant to. You will have plenty of opportunities to do so later. Quite often, patients feel overwhelmed by the enormity of what has happened and cannot deal with anything else at this time.

As a patient, being able to have even a few hours alone or together with your immediate family to get used to the news and to talk about what has happened, before starting to tell everyone else, can be very helpful.

Telling friends and family can be emotionally difficult, and also takes a huge amount of time. It may help to tell one family member or friend and ask them to ring round others.

Despite your best efforts, you will probably still find the telephone rings constantly. Do not feel bad about using the answerphone. Let people leave messages and call them back if and when you want to.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

How do I get the information I want?

When you are worried about meeting a doctor that you may not know very well, it is easy to forget what you meant to ask, and what you have been told. If you can, try to take notes when you attend the main meetings with the consultant. It might be better to take a friend or relative along with you, as they might be able to pay more attention to some of the discussion and take notes for you. It is often the case that you will remember different pieces of information and you may have different questions or concerns. Write down any questions beforehand, so that you don’t forget them, and make sure you know whom to contact if you have any more questions, or urgent queries.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

How do I talk to my children about the illness?

A child of any age will notice a tense atmosphere and hushed conversations. It is very important that you talk to your children about what is happening. What you actually say to your children will depend on their age.

As a parent explaining to younger children about the illness, it may be enough to say that you have some bad cells and the doctors are giving you some medicine to make the bad cells go away.
Older children and teenagers may want to know all that you know about the illness and may well have been with you when you were told the diagnosis. Being open and honest with them and talking together with the consultant about their questions will help you all to deal with the diagnosis. It may also be helpful for them to talk privately about their worries with members of the medical team, such as the doctor, social worker or psychologist.

Children may feel ignored and side-lined due to the illness. Their lives have changed a lot due to this and they may start to feel resentful about the lack of attention. They may also be extremely worried and upset to see what you are going through and it can raise difficult questions in their minds. You will need to give them opportunities to ask these questions and bear in mind that they might find it easier to talk to another adult (close friend or family) as they may not want to upset you.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

How do we deal with the treatment?

While it is good to keep things as normal as possible, worries about infections and the physical effects of the chemotherapy can make that impossible. How you change what you do depends on you and your family, on how you are reacting and on advice from your doctors.

Having HLH can at times feel like a full-time job all by itself – just keeping track of medications, arranging and attending hospital appointments, getting test results, and generally making sure you are getting the best treatment.

As well as the time spent dealing with hospital appointments and related tasks, the emotional trauma can make it hard to keep up with all the usual everyday jobs and work. Do not be shy to ask for help – friends and family are often grateful to be able to do something concrete, so ask them to make a meal, do the ironing, mow the lawn, pick up the prescriptions. There may also be organisations that can help, such as local charities that will offer support or services such as doing your shopping.

There are variations in what your local health service may offer. Some areas offer community nurses (or home nursing teams) who will come to your house to take blood tests, change dressings etc. This will save you a hospital trip. Your local pharmacist may be able to supply some of the less specialised medications, on prescription from your GP, which can be more convenient than using the hospital pharmacy. There may also be a ‘shared care’ arrangement with a doctor in your local hospital so that you can go to a closer hospital for blood tests, chemotherapy or if you get an infection.

Appetite may be affected by the chemotherapy and steroids and can change a lot depending on where they are in the treatment schedule. If you are worried about nutrition, talk to your medical team who will be able to advise you, or refer you to a dietician.

During the period of treatment there will be ups and downs. Although the first shock of diagnosis will fade and you will feel that at least action is being taken to deal with the illness, worries about progress and prognosis will come back from time to time, particularly if things do not go according to plan. It can be difficult to maintain the stability of your home environment and minimise the impact on your family. Help and support from close family and friends, online support networks or your community group can all help to keep your spirits up.

Treatment can range from just the initial biopsy or surgery in some, to 6 months or even 2 years chemotherapy in other cases. It is helpful when you are given some idea of what treatment is planned and how long it might carry on for, so that you can try and organise your lives to cope with this situation. Talk to your Consultant about this but keep in mind that it may need to change depending on your response to treatment.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

What happens at the end of treatment?

Even though the treatment is stressful, many patients find the end of treatment difficult. Some patients have said they felt the disease had only been kept at bay while the drugs were being given. When treatment ends, it can feel as if the ‘safety net’ has been taken away, so you feel more worried about the return of symptoms. This uncertainty can be eased a little by the regular follow-up that you will receive and by talking to your medical team about any concerns you have.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

What resources are there for family support?

Families should be able to gain support from the group of professionals who work with their consultant. They are known as a multi-disciplinary team (or MDT) and usually include nurses, social workers, and psychologists. Many centres also run patient, sibling and parent support groups.

Your GP will be kept informed by the hospital, but it is also useful to keep him or her up to date yourself. They can be a useful source of support for the whole family as he or she may be able to refer you for specialised support locally if needed.

Counselling can be useful for you. Your GP may be able to refer you to a counsellor, or psychologist if required. ‘Relate’ provides counselling for couples, which can help to mitigate the strain that can be placed on your relationship with your partner.

It is not always easy to find the help you need and you may need to ask a few people before you find the right support for you. As well as talking to your GP, try talking to the medical team at your hospital or shared care hospital, your community nurse, oncology outreach nurse specialist or social worker.

You may find helpful national or regional support and advice on our Useful Links page or you may also like to join one of our facebook groups.
HistioUK – discussion or HistioChampions – celebration.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

Where can I get financial support?
In the UK the NHS covers all medical treatment and tests free of charge.

You can also contact the Disability Benefits Centre or the Citizens Advice Bureau for further information.

It is vital that you talk to your employer to explain what is going on and find out what they can provide in terms of flexibility.

A carer’s allowance may also be available. This is means-tested, so depends on your income. For further information, talk to your outreach nurse or social worker.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

How do I find other patients?

One of the real difficulties for patients with a rare disease, such as HLH, is being able to talk to other people, who have been through, or are going through the same experience as you.

Histiocytosis UK has a number of multimedia ways that you can contact other patients and families many of which hold family events.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.