FAQs about PIDs

Here we provide answers to the questions that people have asked about PIDs.

Q. I’ve recently been diagnosed with a PID. We are moving house into a new build and now considering which floor type to get. We were thinking of carpeting throughout. Is that a bad idea?

A. There are no hard and fast rules about what is best. The key is just keeping the carpets clean rather than being prescriptive about floor coverings. If, however, you have a house dust mite allergy hard floors are better, but otherwise clean and comfortable is the best way to go.

Q. I have a primary immune deficiency disorder and currently have some infections.  I need a hip replacement and wondered if I can have this surgical operation?

A. Patients with or without PID and recurrent infection can have surgery.  If the infections are MRSA, then there would be a high risk of wound contamination and potentially poor outcome unless eradication of the infection was undertaken first.  If these are non-staphylococcal infections, then your local team can advise regarding any chest infections etc around the time of any surgery.  Do get your immunology team to consult with your chosen surgeon to discuss the management of any infections.

Q.  My family is affected by PID. We are planning going abroad but want to know what specific risks there may be might be in travelling to certain parts of the world. Can you recommend sources of information that will help us decide where to go?

A. You can get all the health risk information you need on different countries by logging on to these websites https://www.fitfortravel.nhs.uk/home.aspx
and https://wwwnc.cdc.gov/travel/destinations/list.

Q. Are eye problems associated with PID and what should I look for?

A. Infections in the eye (conjunctivitis) can occur in any PID.  Some PIDs, for example Chronic Granulomatous Disorder, are known to cause other eye problems in a few patients.  Research is ongoing into eye problems in CVID, but not much is known so far.  If you have problems with your eyes get checked out by an optician and ophthalmologist, and explain that you have PID. They can ask advice from your immunology team if necessary.

Q. Do you have any information on bone marrow transplant (BMT)?

A. Yes, please look at our webpage on BMT that covers this topic in detail.

Q. When I’m having a ‘poorly time I get chest pain which has been partly diagnosed as costochondritis.  I also get what I imagine is lung pain but it is mainly felt in my back – why?

A. Costochondritis causes pain in the rib cartilages at the front of your chest. These can become inflamed and sore, sometimes with viral infection. Lung pain can occur anywhere in your chest, front or back. Often this pain is worse when you cough or take a deep breath. It is a sign that the lining of the lung and the inside of the chest wall are sore and are rubbing on each other. This can happen in chest infections.

Q. On a trip to see my GP recently they told me I was a very complicated patient. Do you have anything I could give them to help them help me?

A. We have the IPOPI booklet “A Guide for GPs” which you can download from our website or you can request a copy by emailing us at hello@immunodeficiencyuk.org. You can then give this to your GP to provide them with more information.

Q. I’m already under an Immunology team but would like to be as healthy as possible.  Do you have any tips to keep me well?

A. When you have a PID it is especially important to stay as well as you can. You can read our “Keeping well” leaflet and IPOPI’s booklet titled “Stay healthy” both of which contain important information on daily life, hobbies and pets.

Q. I recently had a few internal procedures and was wondering whether there was a protocol as to whether PID patients should have antibiotics when they have exploratory procedures such as a colonoscopy?

A. You should talk to your Immunology team about whether you need to take preventative antibiotics before and after a procedure as they know your case history and are best placed to advise you.

Q. I am travelling to South Africa for a wedding. Will my travel insurance cover me and how much will it cost?

A. If you declare your primary immunodeficiency when taking out insurance you will be covered.  Every company charges differently so we cannot predict how much it will cost, however shopping around is a good idea. This webpage should help you.

Q. I would like more information on my condition but am not in the UK, can you help at all?

A. Our website is available for all patients to gain important information.  We have a range of condition specific booklets here. You can also contact us so we can put you in touch with the national members organisation of IPOPI for your country.

Q. I keep having to explain my PID condition to my GP.  Please do you have a booklet that can help?

A.  This IPOPI booklet ‘ PIDS: Guide for General Practitioners will help’.  Contact us at hello@piduk.org to receive a copy.

Q. Can PID UK provide me with travel insurance?

A. Whilst we cannot provide you with travel insurance we do provide a list of companies on our website that either other PID patients have used or ones that have assured us they consider each person’s individual case. Our ‘Going on Holiday’ leaflet can also help you with things you need to consider when going away.

Q. My daughter who has a PID is thinking about getting a tattoo and I’m worried. What advice can you give?

A. Any tattoo or piercing can get infected so this should be done with extreme caution.  The advice is to go to a tattooist that has excellent hygiene standards and check it has a government license. Check that any needles they use are new and wrapped. Single use or individual portions of dye and inkpots or trays should be used. A surgical skin cleanse should also be used before any procedure.

Q. I’ve been diagnosed with Hypogammaglobulanaemia. What does it mean exactly?

A. Hypogammagloblanaemia is the name given when you have low levels of antibodies that help fight infection. If you are given this diagnosis you should ask your consultant to tell you which antibodies you are deficient in.

Q. Who sets best practice guidelines for the treatment of PIDs? Is this NICE?

A. There are no NICE guidelines for the treatment of PID. The professional organisation UK PIN is in the process of updating and developing clinical guidelines for the diagnosis and management of immunodeficiency.  Each centre has diagnostic and management protocols for the more common PID conditions that they see.  Guidelines are however just that, guidelines, and the treatment for PIDs can vary from patient depending on how the condition specifically affects a patient’s health.

Q. My niece has come out in chickenpox, two days after I spent the afternoon cuddling her. Should I be concerned?

A. Theoretically if you receive immunoglobulin replacement therapy you should have some protection from developing chickenpox as many of the plasma donors whose antibody donations are in your immunoglobulin treatment will have had it. Accordingly the Department of Health guidance suggests that those on regular Ig replacement do not need specific VZIG immunoglobulin enriched for high levels of antibodies to chickenpox. You can learn about immunoglobulin therapy here. If by chance you do develop chickenpox symptoms then contact your Immunology team immediately and they would then be able to offer treatment for the virus.

Q. My sons possibly have NEMO deficiency, which I understand is very rare. Do you have any information on it?

A. NEMO deficiency is so rare there are no statistics on its prevalence. We do have information on NEMO deficiency which has been jointly produced with Great Ormond Street Hospital and the Great North Children’s Hospital. Please contact us if you would like this information.

Q. What can you advise about using homeopathy in PID?

A. Few “natural remedies” (i.e. non prescribable drugs) have undergone clinical trials to show that they work. Many trials have been done in homeopathy, but there is no evidence that it works better than placebo (dummy or sugar pills) in any medical condition. No trials have been done in PID. As with any treatment (medical or alternative) you should ask what the evidence is that it works, and whether it is safe.

Q. Can stomach cramps be part of my PID?

A. Gastrointestinal issues can be linked to having a PID. The IPOPI booklet 'PID and Gastrointestinal Disorders' covers this topic in detail and will be of help to you.  It is also best if you speak to your Immunology team as they are best placed to help as they know your medical history.

Q. My daughter is pregnant with a boy and both my nephews have a PID. Could my daughter be a carrier?

A. Your nephews should speak to their immunology centre to get the full name of the PID that they have. This is important as PID can be inherited in different ways. Your daughter should then speak to the hospital she is under for her pregnancy to tell them about her family history. The hospital can then organise genetic testing if needed. It may be worth you looking at our Genetics booklet to understand more about the inheritance of PID.

Q. I’m getting a lot of urinary infections and wondered if this could be because of my low IgA and low mannose binding lectin (MBL)?

A. You will need to discuss with your immunologist to see if they think there is a specific reason you are getting urinary infections but in general the immune system does not play a role in protecting the lower urinary tract as this is really dependent on good bladder hygiene (voiding often and not holding urine) and normal anatomy.  Low IgA and low MBL are both very common in the healthy population and would not usually be considered a cause for urine infections.

Q. I’m going abroad and am concerned about what precautions I should take?

A. Have a look at our “Going on Holiday” leaflet and our website for useful advice. The leaflet will help you with your planning and ensuring you have all the correct information with you. Secondly visit the Centre for Disease Control website information for traveller’s at https://wwwnc.cdc.gov/travel/ and tick the box stating that you are Immuno- Compromised Traveller along with your destination. This site will provide you wth general advice and specific advice for people with PID, especially if you are travelling to far away places such as India and Africa.

Q. I have been diagnosed with a primary immunodeficiency. Will it ever go away or is this a diagnosis for life?

A. The majority of PIDs are lifelong conditions and in many cases require continuous treatment to treat and manage the health problems that having a PID brings.  Many of the most common PIDs known as primary antibody deficiencies require life-long treatment with immunoglobulin therapy. However in some cases your doctor may trial taking patients off this therapy to see how they manage.

Q. Do you have any information on ill health retirement and deferring of pensions?

A. This is an extremely difficult area that we are currently researching but we do recommend talking to an independent financial advisor about your situation. The following sites may also be helpful:



Q. I have a PID and my partner is concerned that there is risk of passing on an infection if we have sex. Is there?

A. There is no risk of transmitting commensal bacteria (normal bacterial flora) during sex. If your partner is still concerned it is worth speaking to your Immunologist and if needed it may be worth considering some counselling.

Q. We are going on a family holiday and I need to book travel insurance. My child has a PID but is well, do I need to declare it?

A. Yes, if you do not declare a pre existing condition your insurance may be invalid and you will not be covered.

Q: I’m going on holiday and my Immunologist would like me to have the contact details of a clinic where I am going, can you help?

A: If you email hello@immunodeficiencyuk.org we can put you in touch with the countries national member organisation of IPOPI so you can get the relevant clinics details.

Q: I was wondering whether vitamin D deficiency was related to PIDs?

A: Low vitamin D is very common in the UK and not directly related to having PID. Vitamin D is a fat-soluble vitamin and patients with malabsorption due to chronic gastrointestinal infection or inflammation present in some subsets of PID may have more significant vitamin D deficiency due to that.  However, the commonest cause is dietary insufficiency and is not an indicator to "think PID".

Q: I think my child has a PID but I’m not sure what to do to get a diagnosis?

A: Ask your GP to run a blood test to check your child’s immunoglobulin levels and full blood count and have them referred to a Paediatrician. The Paediatrician will then look at your child’s blood results and decide whether a referral to an Immunologist should be made.

Q: I have been diagnosed with MBL Deficiency, should I be under an Immunologist?

A: Not necessarily. MBL Deficiency is quite a mild immunodeficiency and does not always require treatment or for the patient to be monitored by an Immunologist.  You can download our MBL deficiency booklet here.

Q. My young child has just been diagnosed with IgA deficiency. What resources can you offer?

A. We have a booklet on this condition that can either be downloaded or posted to you.

Q. My son has lower than normal IgA and IgG levels. Should I supplement his diet with vitamins?

A. Supplementing the diet with vitamins is not needed as eating a healthy varied diet will provide all the nutrients required.  Anyone who does take a vitamin supplement should not exceed the daily recommended amount (RDA).

Q. I have a PID, should I be concerned about mercury dental fillings?

A. Mercury in dental amalgam is in a stable “complex” and left alone is not related to any health or immunity issues.  Removing dental amalgam uncessarily by drilling, creates a fine mist or dust which can be inhaled, but in general the advice is that even these doses are too low to be toxic.

Q. Are gastrointestinal issues normal when you are diagnosed with a PID?

A. The GI system is constantly exposed to viruses, parasites and bacteria, all of which have the potential to cause irritation, inflammation and infection of the intestinal lining. If you are experiencing continuous gastrointestinal symptoms.  it is important for you to mention them to your doctor as you may be referred to a gastroenterologist.

Q. My child is at university and in the last few months have been too ill to complete exams and coursework. What can we do?

A. All universities will have an extenuating circumstances policy that your son or daughter should look up. This policy is there to assist students who may encounter significant personal difficulties outside their control such as ill health. Many universities can put into place adjustments to support study and assessment.

It is also worth your son or daughter making an appointment with their course leader to explain their circumstances as soon as possible into the year or even before the course starts. If their course teachers know their circumstances from the start they can put in place structures to help them. This can all be done in confidence.

It may be worth you taking information about the condition to this meeting so they have all the information they need. PID UK has resources on conditions and education that can be downloaded here. 

It is also worth noting that people with PID are covered under the Equality Act 2010. This means protection under law from unfair treatment relating to a medical condition. Read more here.

Q. I've heard that vitamin D is important for the immune system. Should I be taking vitamin D supplements?

A. Many people have low vitamin D and may benefit from supplementation. There is general advice on the NHS Choices website here. Paying attention to a healthy diet which is balanced in all mineral and vitamin content is important for all individuals with or without immune deficiency.

Q. I have recently been in hospital due to my condition, combined immunodeficiency and not able to work at the moment. I have been put on statutory sick pay [SSP], which isn’t enough to support myself.  Please can you give advice on whether I am able to get some financial support?

A. You may also be entitled to Income Support if you have a low income and your SSP is less than the amount of Income Support you would be entitled to, although this would only happen in exceptional circumstances. 
If you pay rent, you may be able to claim Housing Benefit. You could also speak to your local council about getting a reduction in your council tax. If you want to get a full benefit check, you can also contact your local Citizens Advice Bureau (CAB). If your illness continues beyond 28 weeks, you’ll no longer be entitled to SSP, but you might be entitled to Employment and Support Allowance (ESA) instead. In some areas, the new Universal Credit system is in place, so you would need to claim that instead of ESA. To find out more about any of these issues, contact your local CAB.

Q. I am feeling very confused, worried and desperate to finding an answer regarding my son’s health. He is 5 years old, had serious repeated infections since his birth and two bouts of pneumonia recently. Tests indicated the ‘possibility of an immune disorder’ but a diagnosis has not been made or ruled out. My son has periods of really being ill but now my GP and the local A & E are regarding me as a neurotic mother to such an extent that I only seek help when desperate. What advice can you give?

A. We are sorry to hear that your concerns about your son are not being taken seriously. We advise that you make an appointment with your GP, without your son there, to voice your concerns and ask for a plan. Remember to keep firm and strong and if it would help, take someone with you for support. Also take along a list of your son's health problems and any admissions to A & E etc.

Ask for an explanation of the tests that have been done, what they rule out and what they don’t, and ask what further tests need to be done. Do tackle the perception that you are being neurotic about your son. You simply want answers to understand what is wrong with your son and it is perfectly normal to be concerned about your son's health.  It may be that the tests are normal and that should be reassuring about future health, so it would be in everyone's interests to clarify the situation.

If you don't get any further ask to see another doctor in your practice. 

Q. My child has a PID and just started school this year. I'm worried that the school will not understand my child’s primary immunodeficiency. What advice can you give?

A. Any parent of a child with PID should speak to their specialist nurse and/or Dr to ask for a school care plan to give the child’s school in conjunction with PID UK information leaflets.

Q. We have a history of SCID in the family and we now have a newborn.  We asked for a prick test to be done at birth but that was not done and we have taken the baby to the GP and they are telling us that we have to get the screen privately.  Would that be right?

A. If there is a family history of SCID, then any newborn should be tested at birth.  You do not need to pay for private testing.  Please get in touch with Immunodeficiency UK and we can put you directly in touch with a specialist centres such as Great Ormond Street Hospital that will be able to help you as a matter of priority.

Q. My wife has ITP and is having intravenous Immunoglobulin treatment twice this week. Do you advise that she should take someone with her?

A. There are no hard and fast rules on this and people differ but it would be good if you or someone else could go with her for support and company for these important first appointments.

Q. Is there any kind of chat room or Facebook page for parents of children with PID?

A. Here are some Facebook groups that have been set up by members of our patient representative panel:


and one for carers https://www.facebook.com/groups/ukpidcarers/?fref=ts.

Q. How good is alcohol gel at killing microbes?

A. Alcohol gel (containing at least 60% alcohol) is useful at killing everyday germs but does not kill all germs, for example, alcohol gel will not kill norovirus, the winter diarrhoea and sickness bug or MRSA. Gels should not be used as a substitute for good hand washing but can be a useful precaution in situations where this is not possible. Another thing to bear in mind is you really need to wash off all visible signs of dirt for alcohol gel to work. So yes do use alcohol gel but remember to wash your hands frequently as well.

Q. I have a PID and have started having trouble with my bowels with pain and lots of watery diarrhoea for the last two weeks. I have no appetite, I'm losing weight and feel drained. What advice can you give?

A. Having gut problems is unfortunately a common complication of some PID conditions but may also be a sign of an infection. Any change in your bowel habits and the consistency and look of your poo should be reported to your immunology team. They can then take steps to help rule out any infection before it takes hold. Take a look at this useful IPOPI booklet on this topic.

Q. What blood tests are needed to establish if someone has an IgA deficiency?

A. Take a look at our booklet on selective IgA deficiency. It provides the information you need on page 5.

Q. I have a PID and travelling to India to the city of Mumbai. Do I need to take malaria tablets?

A. Anyone travelling to an area of the world potentially affected by malaria needs to plan ahead before their trip and check the latest recommendations for antimalarials.

We would recommend that people look up the country they are travelling to on the NHS resource page for travellers at www.fitfortravel.nhs.uk which covers risks for all the countries in the world. You can also go to a specific travel clinic if you need personal advice. If anti-malarials are recommended then inform your pharmacist of any other medicines being taken so they will be able to check for any possible drug interactions.

AND most important don't forget to discuss your trip with your immunology team.

Q. We have a history of heart problems and PID in our family. I wondered if there was any link between heart problems and having a PID?

A. There are a number of rare inherited immune deficiency syndromes which are associated with heart defects present from birth. Examples include CATCH-22 and ciliary dyskinesia. The heart problems are usually evident from birth in these children. CATCH-22  has autosomal dominant inheritance and may affect different family members differently, ciliary dyskinesia is autosomal recessive however, so it would be unusual to have a strong “multi-generational” history of heart problems.

For the general population, including people with PID, heart disease is a common problem and is the leading cause of death both in the UK and worldwide.

Q. Can PID patients donate their organs?

A. Everyone can join the organ donation register in the UK.  Take a look at this NHS website page giving information about how to join the register. The decision on suitability of organs for transplantation is a clinical one made at the time an individual is deceased or if live organ donation is considered during their assessment.

Q. I have just heard my 6-monthly check up appointment with my immunology team has been cancelled and I will have to wait another couple of months. I have some health concerns. What should I do?

A. We suggest that you ring your immunology unit to ask for a cancellation appointment to bring it forward. You should discuss your health concerns with your GP and they may be able to seek advice on how to manage your concerns until your appointment.

Q. Travel insurance - is it necessary to mention PID when completing or renewing an insurance form?

A. Yes you absolutely must declare your PID and any other health condition you may have otherwise your insurance will be invalid and you will not be able to claim should you need to. Visit our travel page for more information and a list of insurance companies that cover people affected by PID.

Q. My doctor has told me my CD3 count is low. What does this mean?

A. CD3 is a marker of white blood cells known as a T cells or T lymphocytes. These cells are important in fighting and coordinating the immune response against a whole range of infections. T cells also work with the white blood cells known B cells or B lymphocytes to help produce antibodies that fight against infection. This result is saying that your T cell numbers are reduced, but by how much is very important.  We would advise that you go back to whoever requested this test and ask them to explain its particular relevance to you and the possible causes.

Q. I have primary antibody deficiency. Can I take homemade Kefir milk safely?

A. Home made Kefir is fine as long as you are confident of the starting culture. For example Lactobacillus is fine but E-coli contamination would not be. We would recommend against using non-specified cultures. Please note there is a tendency for Kefir to promote mucus production of the thick variety.

Q. I have a PID and would like to know if I am eligible for early retirement with a Local Government Pension?

A. Retiring early due to ill health and claiming your government pension is called an “ill health pension”. The usual definition for someone to take an ill health pension is “your physical or mental health is bad enough to stop you from carrying on working, or which seriously reduces the amount you can earn.” Therefore whether you can take an ill health pension will depend on how your primary immunodeficiency affects your daily life along with other associated illnesses. For more information on ill health pensions please visit The Pensions Advisory Servicehere. or call them on 0300 123 1047. Also take a look at our employment rights section.

Q. Are homeopathic/complementary/alternative therapies used to treat PID?

A. There is limited scientific evidence about the benefits of homeopathic or complementary medicines. They should only be used if they support conventional medical protocols set out by your doctor or medical team. Just because a medicine is described as “natural” or “herbal” doesn't mean it is guaranteed to be safe. Always check the contents of any homeopathic or herbal treatments with your doctor. Some treatments will not be suitable for people with PID. Ensure that people offering complementary therapy are properly qualified and registered with the appropriate regulatory body. It is vital that you or your child or family member affected by PID doesn’t stop taking your usual medicines.

Q. My doctor has told me I have a mutation that affects my immune system and causes my PID. What does mutation mean, it seems like an upsetting term?

A. The term is unfortunate, but like many medical terms has a latin basis.  Mutatus in latin means to change.  Mutation means that there is a slightly abnormal change in one of your genes which is what has caused your immunodeficiency. All of us have tiny genetic differences from each other. You have just been unlucky enough to get one that affects how your body responds to infection.

Q. How cautious and “germ conscious” do I have to be with my child with primary immunodeficiency? Can we go shopping, to the cinema? Should my child go to school?

A. These are questions that need to be addressed with your immunologist. Obviously contact with someone who has active signs of illness (fever, cough, etc.) should be avoided. But children who are receiving immunoglobulin replacement therapy to provide them with protection against infections can live relatively normal lives. This includes going to school, interacting with their peers, playing sports, and doing other age appropriate activities. From a psychosocial and developmental perspective, these activities are very important to children. Every attempt to incorporate their immunodeficiency into a “normal” childhood should be made as opposed to having a childhood centered on their immunodeficiency.

Q.  Can I make a difference to my PID condition by changing my diet?

A. Diet, exercise and lifestyle can make a difference. Healthy eating is good for everyone as is exercise. Diet can affect the microflora in the body and this may affect how the bowels work. Dietary changes may help some patients who suffer from inflammatory bowel disease (IBD).

Q. Will I get more ill as I get older?

A. This is not necessarily the case if your treatment is optimised for you at different stages of your life. Keep up with your appointments and links with your clinic. They will monitor your health carefully and help keep you well.

Q.  Is there any problem with having a pedicure or manicure when you have a PID?

A. No. Overall the risks of getting an infection through manicure and pedicure are the same as for healthy people. Choose a place that is reputable and has high standards of hygiene.  We recommend that people with PID do not have ‘fish pedicures’ as the tanks used are full of bacteria and fungi that could cause infection.

Q. I have a PID and considering cosmetic surgery. What’s your advice?

A. In general people with PID can have cosmetic surgery but it’s best to ask your doctor what he advises. As with all operations there’s a risk with infection and your doctor will know what threat these risks are for your condition. Don’t forget to thoroughly research your cosmetic surgeon and their track record.

Q. I have a PID. Is it OK to have Botox injections?

A. Botox parties where you share needles are definitely NOT recommended. If you want to have Botox then ask your health team about this and do your research to find a reputable clinic.

Q. I have a PID and get sinusitis a lot and my doctor recommends an operation to help relieve the symptoms and pain.  Should I be worried about getting an infection from the operation?

A. The risk of getting an infection from this procedure is extremely small and the benefits outweigh the risks considerably.

Q. I have a PID and concerned about sexually transmitted diseases. What advice can you give?

A. As for the general population it is best to practice safe sex using condoms. Sexually transmitted diseases (STDs) are more difficult to diagnose and treat in PID so it’s even more important to be careful.

Q. I have a PID and have just started my periods. Is it OK to use tampons?

A. Yes these are fine but make sure you change them frequently as recommended by the manufacturer.

Q.  I have a PID and worried about birth control methods. Is there anything I should avoid?

A. An IUD (Intrauterine Device) either a traditional coil or progestogen implanted may be used in PID, but is not recommended in conditions which may affect the ability to control wart virus, since monitoring by cervical smear can be more complex due to changes induced by the progestogen coil.  Condoms are always good for birth control if used properly and prevent sexually transmitted diseases.

Q.  My son has a PID and would like to have a pet. Is this OK and what are the do’s and don’ts of this?

A. Yes it is OK for people with PIDs to have pets.  Birds may harbour a number of bacterial pathogens in their droppings including chlamydia psittaci (cause of psittacosis) and reptiles may carry infections such as salmonella. All patients with PID should be aware of the possible risks and consider alternatives when choosing a new pet. When thinking about getting a pet, avoid bringing any animal with diarrhoea into the household; acquiring a puppy or kitten less than six months old or adopting stray animals. Good hygiene is essential when considering having a cat or dog and washing your hands after touching a pet is really important. It would be advisable for your child not to clean out the cat litter.

Q.  My husband has a PID and I’m concerned about Cryptosporidial infection. What precautions should we take?

A. Cryptosporidium parvum is an infectious parasite found in humans and animals. Unfortunately it is not possible to totally eliminate the risk of developing cryptosporidial
infection. Take a look at this website page to find out how to reduce the risk.

Q. I have a PID. Should I tell my dentist and does this mean I should expect to receive antibiotics before treatment?

A. Your dentist should be made aware and can then take appropriate advice from your medical team if required.  For example, patients with complement deficiency on prophylactic antibiotics may well require an additional regimen pre-dental treatment, but other PIDs may not.

Q. Two of my children have a PID. Should I allow them to eat raw food?

A. Raw fruit and vegetables when washed and prepared properly are definitely good for your children.  Usual kitchen hygiene to avoid cross contamination from other food substances is important and to ensure that soil contaminants are washed from the surface of the food (as applicable for all individuals).

Q. My husband has a PID and really likes Japanese food such as sushi especially the ones with raw salmon and seafood. Is it OK for him to eat this?

A. Fish from brackish water harbour a range of parasites, including anisakiasis, tapeworm is an important host for the tapeworm Diphyllobothrium latum.    Although the reported risk is largely based on either rural fish or cheaper fish (commonly used at home or in local restaurants e.g. cod) there is still some risk when eating raw fish. Until recently the European Safety Agency (ESA) required all fish to be frozen when intended for use in sushi, which effectively kills parasites.  Studies showed the risk from farmed fish to be low (because they use a lot of anti-parasite chemical treatments), so this rule has now been relaxed. The removal of an additional safety step in the food preparation chain is a potential problem for PID patients.  The best advice is to check how your fish is sourced and prepared and avoid if you don’t know it is safe.

Q. Is there a link between PID and dementia?

A. There is no evidence of a link, either protective or causative, of PID with dementia. We are living longer and dementia is usually a condition of old age and the number of people affected is on the increase in the general population.

Q. How do I keep up with latest research developments?

A. Keep in touch with clinics for studies. Ask questions - are there any research studies taking place, am I eligible, what’s involved, etc?

These FAQs are added to on a regular basis. They were reviewed by Dr Matthew Buckland, Chairman of our Medical Advisory Panel on the 29th January 2018.