Interview on Raidió na Life106.4fm Transcript with:
Dr Ronan Leahy MB PhD FRCPI
Consultant in Paediatric Immunology and Infectious Diseases,
Senior Clinical Lecturer in Paediatric Immunology
Our Lady’s Children’s Hospital, Crumlin, Dublin 12.
Dr Leahy: The immune system is in place to help you deal with fighting infections… typical infections like bacteria… sometimes we meet people that don’t have immune systems and the main problems they have is that can fight or deal with these infections.
Sometimes the immune system turns against the body, and in that case, it is categorized as an Autoimmune disorder as it is called.
At first there’s a chance that they have a problem with arthritis, or with the thyroid or with their legs, sometimes there is a lack of blood cells.
So normally what happens is that the child or sometime the older children are visiting the doctor a lot more than they really should, and they are taking more antibiotics than usual. And they will come back to their doctor with more infections or even an auto immune disease.
Normally that is how we see the patients first.
Interviewer: And how exactly is this diagnosed because sometimes all it is really is infection after infection?
Dr Leahy: Firstly, we meet the patients and we will look at the scale they have. How often they would visit their doctor, the types of recurrent infections they are getting, just how strong the infections they have are, how the patient is after the infection.
After that we would do a foundation of the patient. The typical thing we would do in the hospital is we would look at the patient’s skin, we listen to the heart, the lungs, and also by the end we will test the blood.
We look at the amount of blood cells that are in the blood we look at the immunoglobulin levels that is made and seen in the blood and between the tests we do on the patients and the tests we do on the blood, when we look at them together it gives us an understanding of what is going on with the patient.
And normally, the illness like this isn’t seen too often, normally there is another explanation. But we still test for these illnesses because as you know there are patients that have problems with it
Interviewer: and of course there are a few different types of this illness, it not like.. I don’t want to compare it to any other illness because of course they’re all different from each other but there are different varieties of this type of illness, there’s the auto immune disease, and then you have a primary immune defiency and a secondary immune defiency. So there are different types, would you be able to differentiate those for us?
Dr Leahy: Of course, we call a primary immune defiency the illness that is given to us by our parents that is based on our genes. Secondary immune issues is if you’ve had an issue with medication or another issue……
Interviewer: …..it would be from outside sources so maybe environmental factors or things like that….
Dr Leahy: That’s it exactly. So normally because we have medication that is used that can sometimes alter or effect the immune system we will see more secondary immune defiency compared to what we saw a few years ago. But for the primary immune defiency, the illness that is hereditary, those Figueres don’t change much year on year. Usually we don’t see them that often but there is one of them that can be quite dangerous and normally we will see those very early on when the patient is only a few months old but again that depends on the disorder
Interviewer: and as we know there isn’t much said about these types of illness in the media or anywhere really, I feel like you have to have it before you hear anything about it, but is there much research being done by people in regard to these illnesses?
Dr. Leahy: Yeah there is a lot of research being done. Because we don’t see these illnesses very often it is difficult to do research in only one country. For example, there are only 100 or 200 children attending the hospital here with these types of illnesses, but in bigger countries there are more children attending the hospital with these types of illnesses. So, to deal with tat problem there is research being done between all the countries. There’s an organisation called the European Society of immune defiency and we meet all our patients and that way we can all undertake the research together, that way we can learn more about these illnesses.
Interviewer: and is that difficult because maybe not every doctor will have the same case?
Dr Leahy: it does be difficult but on the other hand there is contact with doctors all over Europe and myself I do speak to doctors in England, France Germany all the time. It very often that I spend my day talking to these doctors about cases that I see and that’s how the research is done with this type of illness. Its not like asthma or diabetes, we don’t have large amounts of numbers, and the patients we do see we do a lot of work with them and it often that we are working with doctors or specialists in England or Germany and other countries, we work together on any one patient. So, its very interesting like that.
And even though its not in the media or its not maybe seen too easily, the work is still being done.
Interviewer: I might be putting you on the spot now, you might not have an answer but how many doctors are there dealing with this type of illness in Ireland at the minute, do you know?
Dr Leahy: well , there aren’t many of us here there’s only one pediatrician, which is myself, and with specialists for adults, there’s 2 in Galway, maybe 3 in Dublin, so there’s not enough of us here, but we do still do our best and id love to have a colleague to help me, and I am tying to get that, but I think, there are difficulties that patients have with this illness, especially those that are dependent on immunoglobulin, those that cant administer immunoglobulin at home themselves it a pity, but we are always trying to better the services we have but as we can see in every department, there are problems, and we would like to fix them.
Interviewer: and I know that the government play a big part in allowing this medication for patients that want to administer the medication at home, but what exactly would you propose the government do to deal with these problem at the minute?da
Dr Leahy: well, we have done a report on that and we wrote a model of care to deal with those problems, for those that are dependent on immunoglobulin at home and we sent that to the HSE and the department of health and we are waiting for a response from them. At the minute were depending on the local health boards to give funding to the patients so it depends on a person in an office in cork or In Galway and that’s not god enough especially on the patients so were still not happy but we are trying to change that.
Interviewer: and I regards to the medication is there one way to treat everyone because there is maybe that much research done?
Dr Leahy: I suppose the main issue is that we only see patients like this occasionally so if you don’t know about this issue you know you wot see it, I suppose, if you can give patients help with support groups like the IPIA that’s very important, either for yourself or your family. After that wed like to do screenings at birth. We can test the blood to see these illnesses and to diagnose patients early so if we can do that it would help us. And after that I suppose put pressure on the government to provide better services for us and for the patients.
Interviewer: and the last question I have for you is, especially most of the time people that have these illnesses, you don’t know that they have them because they don’t always look ‘Sick’ and maybe sometimes that’s one of the most difficult things they can face but for the wider community that are out there and that are listening, that may not have any experience with this type of illness, what you’d you advise them if they think they have this?
Dr Leahy: it is difficult to diagnose, but d you’re back and forth regularly to your doctor and hospital, I suppose ask the question. Ask them ‘’ do I have an issue with my immune system’’ there is a chance that the doctor wont think of testing for this because they don’t see them all the time so ask them yourself ‘’do I have an issue with my immune system ‘’ because its not difficult to tells the blood for these illnesses. It not difficult to check the immunoglobulin levels or blood cells, its not difficult at all. I would see roughly about 20 new children each year. Its not a lot but it is still happening. In adult hospitals there could be more , I would say that in Ireland all together there would be roughly 400 people with these illness. And that’s not a lot
IPIA will like to give a special thank you to Orlagh Woods for making this possible including the translation!