Efforts are underway to raise awareness for a condition which only affects around 300 people on the Isle of Man.
Today marks the start of Haemochromatosis Awareness Week.
The condition causes iron levels in the body to slowly build up over many years; symptoms can include fatigue, depression and joint pain.
Sufferer, Carolanne Hanley told Manx Radio more about the condition.
Hi I'm Chanel, one of the journalists at Meng's Radio. Welcome to the latest edition of Meng's Radio Newscast. I'm Miss Caroline Hanley. I'm actually a person who was diagnosed with the condition a couple of years ago. I've given my experience. I'd like to raise more awareness because obviously when I was found out that I had it, I was like wow, that's you know something I've never heard of before and you kind of assume that people are aware of low iron and everybody's obviously told you know eat the leafy greens and all this and iron's good for you but I was never aware that too much iron could actually be a bad thing. So I just want to get it out there really and that people need to be aware because it is a condition that if you do unfortunately have, it can be quite devastating or it can be one that can damage you quite a lot or can be one that you suffer with quite a bit. Yes, it's Monday the 1st of July all the way through to Sunday the 7th. Oh perfect, now in this week you know tell me about this week, Hemochromatosis Awareness Week. Well basically, I mean I don't believe there's been much ever done over here on the island but in the UK there's the Hemochromatosis UK Society and they are an organisation that are available to everyone in the UK but they also branch out to the island here and Scotland and Ireland and they do put events on in the UK or they do fundraising events or they do where people can turn up for a cup of tea and discuss and it's just literally just getting the awareness out there of people who maybe don't know what it is, maybe they're newly diagnosed to it and they want a bit of a chat and I didn't really know what to do over here for it because as I said I don't think it's ever been discussed over here or any sort of awareness so I wanted to start small so I just wanted to get it out there in the sort of the media and I thought well what do people generally do over here when somebody's passed away as a tribute or when there's some sort of charity event on breast cancer obviously over you and I thought it was a fine example and I just thought get the Tower of Refuge lit up because you know like I said breast cancer are always lighting it up, there are other organisations that light it up and everybody sees it you know everybody lives in Douglas or they work in Douglas or they come into Douglas to do their shopping and then if they see it and they're going to be like well why's the tower red and then they're going to ask questions and then that gets them asking questions about the condition and then oh well I know somebody with that or oh I think I might have that and I just wanted to do something small really just to so we could get an initial frame over here because as I said it's not been discussed before and this is it's it's it's small but it's a big step for the island now definitely do you know how many people on the island perhaps have hemochromatosis? I don't and I appreciate that there's obviously a day to protection act element there but when I first went with my treatment initially in January 2023 I was obviously talking to the nurse at the time and I got talking partly through the conversation about the condition I'd obviously told them I was nearly diagnosed and I'd done a bit of research and in the conversation it came up well there must be you know a few people that come up here to have treatment is it a lot is it a few and they told me at the time bearing in mind this is obviously about a year and a half ago that there was 300 people that were registered on the books up at Newlands to have a fen section, fame or chromatosis so it's there's a few but in relativity to the rest of the island that's quite a small percentage and what is the condition what are some of the symptoms and you know what should people be looking out for if they're listening to this and thinking actually this sounds very similar I am aware of these symptoms or signs? Well there are actually sort of four versions to it so there's a juvenile there's a genetic and then there's another one that I can't remember and then there's a secondary one and the secondary one can be after you've maybe had an illness or an accident but generally the genetic one is the most profound and the most common and it's a genetic one so you were born with it and it's basically faulty genes that the way they absorb iron they store the iron and they utilize the iron around the body so if you've got these faulty genes you are more vulnerable to loading iron and then that can cause organ damage it can make you tired it can cause all sorts of nasty problems and diseases skin problems diabetes liver problems the list is endless unfortunately I'd say the common problems that you want to be looking out for are probably joint pain fatigue and maybe mental health so maybe people who are depressed unfortunately and just anything that's a bit seems a bit odd but a lot of these symptoms are also unfortunately crossover with other conditions so you can't always tell so obviously if in doubt maybe you've got you know fatigue that's been going on for six months or something then maybe you know it's worth chatting to you P to find out whether this is the course or whether it's another and in particular it's your iron levels that you want your doctors to be checking there's a protein called ferritin and that's what is basically is the storage of iron in your body and people who have this condition there are certain things that can trigger information in your body that might make the ferritin higher than it should be but people who've got this condition have ferritin much higher than it should be and it should be around 50 so I when I first started it was 230 I think when I first started my friends sections so maybe not relatively high compared to some but obviously a lot higher than it should be and your doctors will obviously if they feel that you maybe have higher ferritin this is how I was kind of picked up on it and they did a routine blood test and it came back and they were kind of like mmm so they reran them because as I said an infection or inflammation can trigger your ferritin levels so they reran them again the second month and they came back again and they'd gone up even more so then they decided well we'll do it again but we'll send you off for a gene test and they sent they to do gene tests it's just a blood test and they sent that away for six I think it's six weeks approximately they can take six to eight weeks so initially they're looking for your ferritin and your iron levels and to see what's your saturation as well as another one they're looking for on your iron because it's a I think for a lady of my age it's got to be about 40% your saturation and if it's over then you store an iron much quicker than you should be which means you're going to load it much quickly and obviously if your doctor then sees a pattern to your ferritin they can it might explain why you're tired or why you've got these problems but then you can obviously they can go from there if you need to have the gene test but the gene test is we'll obviously prove whether it's the cause and then obviously you can go down the route treatment very interesting because I was going to ask at the beginning when you started mentioning the symptoms I was going to say these are quite common symptoms so is it hard to diagnose is that how you diagnose it by checking the iron level essentially yeah I think there were other markers and stuff like your leather and stuff like that and some people myself included can have like higher levels in their livers and stuff because it's unfortunately one of the first organs that gets attacked but essentially it's your ferritin and your iron levels that they're checking yeah so like I said there could be other causes that are making your iron higher than it should be but ultimately that's what they will check but again it depends on your doctor and if you go to see a regular doctor they're going to know whether your you know your maybe got another condition that might be playing the part maybe you're a diabetic and your levels are fluctuating or something so but ultimately yeah it's the ferritin levels that's very interesting so in the week you'd like to raise more awareness you'd like you'd like to reach as many people as you can is there anything else that you'd like to do or anything else you're planning to do during the week I hadn't but and this is also a shout out to my friends at Northern because I'm on a running a local running committee and I'm also a club member uh the one of our members who used to be with us on the committee and she does elsewhere she's got a uh Andrew's have got like a sports day on on Sunday and they're doing a run and they're doing the walk and they're doing some other bits and bobs now I've been to this walk in the past as a general person who just goes and does it for the athletics and does it for the fun but I'm actually thinking now of going on Sunday because it's just under the awareness week of going on Sunday and doing it in for the week and popping on a t-shirt or something or going red maybe and people are sort of like why are you red and then I get you know get raising a bit more awareness but I didn't actually think of this till about two days ago so but yeah I'm thinking of doing that on Sunday but I haven't quite decided yet because I don't want to look too much of a feel and if it's too hot as well I don't know you'd tell me. It's probably worth me imagining as well that it's a condition that tends to be in the older ladies especially when they get to menopause um men do get diagnosed with it and they do get diagnosed younger than women but it tends to be a condition that's diagnosed in 50s, 60s, 70s so um it's not completely rare but it's not as common for people um under 40 to get it so it was a bit of a shock so it was a bit of shock for me when I was diagnosed with it so maybe ladies who have just reached menopause or within the last six months and they've noticed yes the menopause is obviously a difficult transition for a lot of women anyway but maybe they've noticed they're a little bit more tired they're a little bit sore than usual because um women express some of their iron during their monthly cycle and when they get to menopause they're obviously stopping that process so they're storing their iron more so they might find because they can't expel it they're loading more quickly and if they've got that condition then they obviously need it need to be diagnosed and dealt with so just you know if there's any woman out there who's baby reached menopause in the last year or so and as notice that you know they're tired they're sore or they've got some sort of weird skin rash or something like that then you know something that isn't quite right just go and get themselves checked out because they might have that you know condition and just anyone that like I said ultimately if you're not concerned just go and speak to your GP but also the Hemachromatosis UK society website is brilliant they have a face boot group as well um I joined that um I know there are a couple of manxies in there not many but there are a couple in there but that's one that's broad across the UK but I know they sometimes do have people that come in from further abroad and that's just um you know a site where people chat about their experiences so whether somebody who's been in had the condition for 30 years or somebody who's had it for three months and again if people who are newly diagnosed or people who are a bit concerned and I'm going to my GP next week I'm going to discuss it and he's going to send me off the chest people conversations like that get discussed in there and if people just want to go in there and say well you know I want to learn more about the condition or I think I've got it what should it do then they can obviously signpost themselves to their or the society website if you just put Hemachromatosis UK or Hemachromatosis UK society in google or your preferred search engine then it will signpost you to the relevant links is there treatment available on the island yeah it obviously does vary on the individual but um if you found to have anything like diabetes or anything as a result obviously that's dealt with separately as you would but in terms of the actual iron overload there's no cure for it but it's regular vent sections so there's a lovely team up at nobles in Newlands and I won't embarrass them by naming them Joe who is actually I'm so free blaster and but Joe who is actually got the condition herself as well and I don't know the full story behind it but she fought very hardly a few years back to get a vent section department over here and it's paid off bless her and initially based on what your levels are or some if you're older it might be the high of an effort takes longer you will have maybe weekly vent sections or maybe two weekly I started off two weekly and then as your levels drop they get a bit spaced out and then maybe some people then when they get to what they call maintenance which is an acceptable level it's then basically just having your bloods monitored every you know three months and some people will go and then have a vent section done every three some might be six some might be you know once a year depending on their levels again this is where menopause comes in because as you get to menopause and you're not having that monthly your levels are going right and therefore you might have to have them more quickly and medical then section it's a bit like a blood donation it's the same sort of process you sit in a chair they draw the blood out but it's done more in a therapeutic sort of environment and also because if with some people maybe having to go every week the body can't withstand that and therefore if you know something happens or you pass out it's obviously in it and that has happened to me a couple of times where I've nearly passed out my first one was disastrous bless them and but if you've never done the experience before then you're never gonna you know what it's like until you've done it and but they're brilliant up there I mean I know the nurses and I know they're paid but they really do look after you and nothing seems about before you and at the end of the day they just want to take your blood out and look after you and but then that's it basically and then they just they bug you in again so they're lovely people and they try and be flexible obviously around your life and so forth and your working commitments and stuff yeah so they're really really nice up there it's worth mentioning as well um the ferritin level to be an acceptable maintenance and acceptable level is 50 by the hemachromatosis UK society here on the island they go by that as well but there are some places in the UK that go by 50 and some that go by 100 but that's done to protect further damage some individuals it might be you know slightly less and maybe they're better at 45 or some people are better at 55 but roughly in that area thank you for making it to the end of the Manxeradian newscast you are obviously someone with exquisite taste may I politely suggest you might want to subscribe to this and a wide range of Manxeradia podcasts your favorite podcast provider so our best bits will magically appear on your smartphone thank you [BLANK_AUDIO]
