Living with immunodeficiency and thriving at college or university

Moving on to begin living independently at college or university can be an exciting time and a milestone for many young people. It’s an opportunity to not only broaden your knowledge and education but also to meet new people, encounter new experiences and build your independence.

While all students need to plan for this transition, students with primary or secondary immunodeficiency have some extra things to consider. Read on for practical tips and resources to help you navigate your higher education journey.

Starting your journey to independence

At about the same time you start to think about applying to university, it’s likely that you will begin the transition from paediatric to adult clinical services. This may mean that your care is moved to a different clinical team and possibly a different hospital.

At university or college, you will be responsible for managing your own care; for example, administering your immunoglobulin replacement therapy (infusions). A ‘good’ transition to adult clinical services will support you with that and give you the necessary tools to enable you to manage your care independently.

Be proactive during your transition to adult care. Your clinical team will give you expert advice, support and, if you need it, practical help. Make the most of the help offered.

If you’re having infusions, you may need to consider whether your current method (IV/subcut) is the best for you once you’re living independently. See Immunodeficiency UK’s leaflet on options: Choosing subcutaneous or intravenous immunoglobulin therapy. Consult your clinical team for advice and don’t be afraid to adapt your infusion routine to fit in with your new way of life when you’re at college or university.

Know your rights under the Equality Act 2010 and investigate your entitlement to benefits that may help support you while you study (see below).

What to consider when choosing a college or university

Location
Consider whether it’s a priority for you to have an easy journey back to your family home and your hospital or clinic. Will the journey from campus to your family or medical team be manageable for you when you’re not feeling your best? If you’re moving away from home, is there an immunology team nearby in case you need medical support? If your family needs to travel to visit you if you become ill, can they do that easily?

Try to attend open days and speak with other students and staff to understand if the college or university you’re thinking of applying to can meet your needs. Take the opportunity to view the accommodation on offer (see the section below).

Student welfare
Research the student welfare rankings of your preferred college or university and read the reviews of current students to gauge the extent of support for students’ physical and mental health.

Course timetable
Think about how flexible the course structure is and whether that suits your health needs. Are there lots of early starts or long days filled with lectures? Is the course exam-heavy, or does it include ongoing coursework and projects? Can lectures be recorded if you cannot attend in person? Can supplementary seminars/meetings be provided if you’re ill?

Does the course include placements, travel or physical activities? Will you be able to manage your treatments alongside your studies?

Accommodation
Living with an immunodeficiency means you may need to be more cautious about environments where you might be exposed to illness.

Check that the accommodation on offer meets your needs. If possible, look around some examples of typical accommodation. Questions you could ask are:

Is it possible to have an ensuite bathroom?

Is there any storage space for medicines and medical equipment (if you will need to store your medication)?

Do you ever have to share a room?

How many people share the kitchen? If all meals are provided, are there still kitchen facilities you can use?

Is there a lift (if you need level access to your room)?

Can you live in university accommodation beyond the first year?

Are there rooms adapted for students with disabilities (if you need one)?

When allocating rooms, is priority given to disabled students?

How far is the accommodation from the university campus? Must you walk or cycle, or take public transport, to get to lecture halls, laboratories, libraries, and so on?

Planning ahead for the start of college or university

Prioritising your health

Ensure you have adequate stocks of medicines that you may need, such as stand-by antibiotics and immunoglobulin therapy. Ask your immunology team if you can have a repeat prescription for your rescue antibiotics so they can be started promptly and then re-stocked. Work out how you will store your medicines.

If you have immunoglobulin replacement therapy, decide how you’re going to manage your infusions.

Set an alert for ordering your stocks of medication, and schedule a regular time in your week if you need to administer treatment, such as immunoglobulin infusions. It’s so easy to get busy and distracted, and you can forget your regular routines.

Check your vaccination record and get the vaccinations you need. Ask your immunology team which vaccines they recommend you have before going to college or university.

Arrange to have seasonal vaccinations, if possible before you go to university; if that is not possible, try and get them as soon as they become available. It’s often quicker to book seasonal vaccinations via a local pharmacy.

Register with a local GP. Locate a surgery near the campus, register with them, and inform them of your condition early on. You can find information about how to do this at Find a GP – NHS.

Gather digital information or paper records about your health. Make sure you know your own condition and the treatments you’re on. Have your medical documents and prescriptions accessible in case of an emergency. Request referral letters and documentation about your condition and care from your immunologist and any other specialists that you see. Share this information with your new GP. Signpost them to, or give them a copy of, the booklet A Guide for GPs.

If you haven’t got one, consider buying a prescription pre-payment certificate to keep prescription costs down. In England, once you are 19 years old, you will have to pay for your prescriptions. In Scotland, Wales, and Northern Ireland, people receive free prescriptions regardless of age.

Getting support

Before arriving at college or university:

Contact the university to tell them about your needs. Make sure your accommodation needs are met, get reasonable adjustments in place, have an emergency plan, and so on.

Ask for support. Your university or college’s student disability/wellbeing officer or support services are there to help you. They can be a great first point of contact for practical advice and will be able to signpost you to counselling services and academic advisers. You can find information on the services available on your college/university website.

As soon as your place is confirmed in August, you should get in touch with disability support services. To follow up, arrange an in-person meeting before your lectures start.

Apply for any benefits you may be entitled to during your studies. These include the Disabled Students’ Allowance (DSA) and Personal Independence Payment (PIP). See below for more details.

Packing for university or college

There is a lot of information available regarding what to take to university, but make sure you take items that will help you maintain good health.

University accommodation is notoriously cold and can be noisy – make sure your clothes and bedding provide adequate warmth, and consider taking noise-cancelling earphones/earplugs to aid sleep.

Pack a first aid kit, including painkillers.

Starting your course

Keeping well and coping with infection risk

Living with immunodeficiency means you may need to be more cautious about the environments where you might be exposed to seasonal respiratory illnesses, such as flu and COVID-19. At university or college, you will inevitably be mixing with a wider range of people from different parts of the country, and from other countries, and this may expose you to new strains of microbes. Knowing this risk will enable you to balance it against the choices you make, so you can make the most of university life.

Everyone has a different approach to risk, but measures that help reduce your infection risk include:

regularly washing your hands with soap and warm water

using a hand sanitiser

wearing a facemask if mixing with lots of people, such as in lecture halls

keeping your distance from unwell people

planning how to communicate to other students in your hall and on your course that you may get tired and may leave social events early.

These leaflets may be helpful:

Keeping well and healthy when you have an immunodeficiency

Stay healthy! A guide for patients and their families

Know when and how to seek help

Recognise the signs of infection: Fever, fatigue, cough or changes in your usual health should be taken seriously. Seek medical support promptly if you feel unwell.

Have a plan for periods of illness: Know what to do and who to contact in case of a health issue. If admitted to hospital, contact your immunology team to let them know because they can give advice on your care at a local hospital. Also contact your tutor to inform them of your situation. Don’t assume that university staff will contact your family on your behalf – they may not.

Build a support network

Your immunodeficiency does not define who you are, and you don’t have to tell anyone about your condition if you don’t want to. However, there may be occasions when you may need extra support, and having people know about your condition could be helpful.

Here are some things to consider to build any support network you might need:

Asking for support: Your university or college’s student wellbeing officer or support services are there to help you. They can be a great first point of contact for practical advice and will be able to signpost you to counselling services and academic advisers. You can find information on the services available on your college/university website.

Staying connected with family/friends at home: They can offer emotional support and help monitor your health from afar.

Making new friends: Think about how much you want to tell your friends and housemates about your health condition. You don’t have to share every detail. Just saying that you have a weak immune system or your body isn’t good at fighting off infections might help them understand your periods of ill-health and allow them to support you.

Connecting with others: You could look for online or on-campus chronic illness or disabled student groups for peer support.

Navigating your social life

Freshers’ Week and socialising are a huge part of university and college life. You don’t have to avoid going to busy clubs, bars and events if that’s what you want to do, but you do have to understand the risk of infection.

It’s entirely your decision about what you choose to do, and you should feel empowered to do whatever makes you feel comfortable. Here are some options you might consider if you want to lower your risk of infection in social settings:

Set boundaries. There’s nothing wrong with politely declining close contact (e.g. handshakes, hugs, shared drinks). Your health comes first.

Inform your housemates about the risks that coughs, colds and respiratory illnesses (e.g. flu and COVID-19) pose to your health. Good hygiene and domestic cleanliness are also important to reduce infection risks. Let your housemates know how they can best support you.

Choose lower-risk settings to prevent infection. Meet friends outside, at quiet cafés or in small groups rather than at crowded clubs and bars.

Know your rights and get the support you deserve

In the UK, people affected by immunodeficiency are protected from discrimination based on ‘protected characteristics’ under the Equality Act 2010. Under the Act, you have a legal right to reasonable adjustments or changes that remove barriers to education that would otherwise put you at a disadvantage compared with non-disabled people. Don’t worry, while immunodeficiency is classified as a disability under law, you don’t have to identify as disabled.

Reasonable adjustments

As a student with immunodeficiency, you can access a range of support through your university and student finance department, but it’s up to you to apply for it and ask the right questions.

Start by requesting a needs assessment. This could be via an independent assessment centre or at the university/college, if they have the facility to do this. If you qualify, you could get essentials like a printer, laptop, taxi allowance or software (e.g. text-to-speech software if you suffer with fatigue or brain fog).

The process can be a bit complicated, so ask for help from your student support advice services at your college or university.

Ask your university or college for a disability support plan (sometimes called a ‘student support document’ or ‘learning support plan’). This is a document that tells your lecturers and tutors from day one what reasonable adjustments are recommended for you.

Examples of reasonable adjustments include:

setting flexible timetables or deadline extensions if you have been unwell

allowing you to type rather than write during exams

allowing you to take rest breaks during exams (see Advice guide 17: Rest breaks / ‘Stop the clock’ in exams)

holding lectures in rooms that are on the ground floor or accessible via a lift

giving you access to a notetaker if you miss lectures owing to illness.

Benefits you may be entitled to

Living with primary or secondary immunodeficiency, or the long-term effects of treatment, can come with extra costs. Depending on your circumstances, you may be eligible for financial support to help ease the pressure.

Disabled Students’ Allowance

If your immunodeficiency or treatment has a long-term impact on your studies, then you may be eligible for Disabled Students’ Allowance (DSA).

DSA helps cover extra study-related costs if you have a disability, mental health condition or long-term illness. It can help with the costs of:

assistive technology (e.g. screen readers or speech-to-text software)

non-medical helpers (e.g. notetakers or study mentors)

travel, if your condition means that you can’t use public transport to attend your course

other study aids to support your learning.

Receiving a diagnosis doesn’t automatically entitle you to DSA. Eligibility is based on how your health affects your ability to study and the type of course you’re doing.

Learn more about DSA and how to apply

Personal Independence Payment

Personal Independence Payment (PIP) is a benefit designed to help with the extra costs of living with a long-term health condition or disability. In Scotland, this benefit is called Adult Disability Payment.

You may be eligible for PIP if your condition makes it more difficult for you to perform everyday activities.

Key points:

PIP is available for people aged 16 and over.

It isn’t based on your diagnosis alone, but on how your condition affects your daily life and mobility.

An assessment is required to determine your eligibility.

Find out more about PIP and how to apply

Top tips

Being at college or university when you have an immunodeficiency may feel like a big step. It’s completely normal to feel a mix of excitement and nervousness.

Here are some top tips to help you:

Talk to your lecturers and tutors
Reach out if you’re struggling with assignments or finding certain topics difficult. Most staff will want to support you – they just need to know what you need.

Try not to stress too much about assignments
Be kind to yourself. You’re adjusting to a new routine while managing your health, and that takes time. Don’t focus too much on grades; focus on doing what you need to complete assignments.

It’s okay to say no
Whether it’s social events during Freshers’ Week or other pressures, you don’t have to do anything you’re not comfortable with. People might not understand your situation at first, and that’s okay. What matters most is listening to your body.

Set your own pace
Completing your assignments/course in the usual timeframe may present challenges if you have extended periods of illness. Talk to your tutor and ease yourself back in gently after any absence. Focus on your wellbeing.

Reach out for support
At your place of study, student wellbeing officers or student support services are there to help you deal with any personal or academic challenges that you might be facing. They can be a great first point of contact for practical advice.

You’ve got this!

Living with an immunodeficiency may present challenges, but it doesn’t mean missing out. With preparation, open communication and the right support, you can enjoy everything that student life has to offer while prioritising your health.

Useful information