This booklet ‘ Working with your GP’ may be helpful. Contact us at hello@immunodeficiencyuk.org to receive copies.
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.
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.
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.
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.
Keep in touch with clinics for studies. Ask questions – are there any research studies taking place, am I eligible, what’s involved, etc?
When you have an immunodeficiency 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.
Hypogammaglobulanaemia 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.
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 Immunodeficiency UK information leaflets.
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. see our information booklet on NEMO.
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.
We have a booklet on this condition that can either be downloaded or posted to you.
Take a look at our booklet on selective IgA deficiency. It provides the information you need on page 5.
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.
If you email hello@immunodeficiencyuk.org we can put you in touch with the country’s national member organisation of IPOPI so you can get the relevant clinics details.
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.
The risk of getting an infection from this procedure is extremely small and the benefits outweigh the risks considerably.
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.
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.
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.
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).
Low vitamin D is very common in the UK and not directly related to having an immunodeficiency. Vitamin D is a fat-soluble vitamin and patients with malabsorption due to chronic gastrointestinal infection or inflammation present in some types of immunodeficiency may have more significant vitamin D deficiency due to that. However, the commonest cause is dietary insufficiency and is not an indicator to “think immunodeficiency”.
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.
Homemade 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.
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).
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.
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).
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 people with an immunodeficiency. The best advice is to check how your fish is sourced and prepared and avoid if you don’t know it is safe.
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.
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.
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 immunodeficiency so it’s even more important to be careful.
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.
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. 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 information on the inheritance of immune deficiency disorders have a look at our booklet ‘Genetic aspects of primary immunodeficiency’.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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. Immunodeficiency UK has resources on conditions and education that can be downloaded here.
It is also worth noting that people with an immunodeficiency are covered under the Equality Act 2010. This means protection under the law from unfair treatment relating to a medical condition. Read more here.
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.
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.
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.