Two Isle of Man residents are hoping to form a local group to help support and advise people with an iron condition.
Carolanne Hanley, a sufferer, and Rowanna Miller, whose partner has the condition created the Manx Haemochromatosis Support group on Facebook after seeing that there could be 500 others affected on the Island.
This Saturday the duo are holding their first coffee morning or 'Iron Bew' as they call it.
Hi I'm Chanel, one of the journalists at Meng's radio. Welcome to the latest edition of Meng's radio newscast. So I'm Carol Ann Hanley and I'm the founder of Meng's Hemochromatosis Support. I'm Rowanna Miller and I am Carol Ann Support. I'm also Admine on our new page on Facebook. Hemochromatosis it was not something that was widely known about but since then you've come back and you've created a whole group, a support group. Yeah well we um I would say came on in July and I was expecting you know one or two people to sort of take note of what was done with the the Taliban, little but obviously the interview podcast but I wasn't quite prepared for the responses, responses have got you know I had people messaging me about their own experiences others about families you know their relatives and the families who've got it others saying you know it's about time somebody did something. I was even classed, some people have called me a trailblazer or a pioneer which I thought was quite a bit big deal and that's obviously not why I'd done it but it's nice to people to see me like that and it was part I'd obviously in the background I'd considered over the last years since I'd been diagnosed about doing something about setting something up and I never really did but then I thought after the great response that we'd had maybe this is the time to do it and I know at the time you said there were about 300 or just over 300 people that suffered with the condition. Is it a condition? Yes right that's suffered with the condition since interacting with people and their family members you know is the number actually more do we know? We suspect it is because obviously we we don't know for certain but I think there's more demand on the services and there's more people who maybe have partners affected or their children are affected and they don't say anything about it so I think what was it something like 300 I'd said but that was obviously going back a couple of years and obviously more people are becoming aware of the condition more people are getting diagnosed and therefore there's more people with it and I was actually up for Venice section on Tuesday and one of the the nurse up there was actually telling me that she said there seems to be more people and therefore there's more demand for the service so really in truth there's obviously quite a lot I mean a small proportion to somewhere in the UK or Scotland but quite a lot really for the island I reckon there's probably at least 500 maybe to a thousand over here when you if you went out and you know counted up every individual and then again that's the people who've maybe been picked up because there will be people out there who don't know because obviously it's genetics and they have to be screened for it and picked up in the first place now forming this group I know it took lots of lots of time it took lots of support as well on your side but being able to provide this group to provide that safe haven for people and their families you know tell me a little bit about that well we just want some more really where people can kind of feel comfortable and chat with one another and get something out of it because I found and I know Rowanna's has had this as well with her other half he's got the condition it's quite lonely and isolated over here and there's not much support outside of manx care and that's something we'll touch on but um manx care brilliant no doubt and no doubt there no problems there but we've got no sort of group for anybody who can talk about it whether they're newly diagnosed and they need to help whether they're upset whether you know what's the next step because it's something that you're kind of having to live with for the rest of your life as well yes it's not the worst thing it's not something terminal like cancer but it is something that will affect people and in some cases some of the stuff that can actually be long lasting in terms of the damage and no one's got any sort of experience or there's no benchmark over here for people to say well you know oh I'm newly diagnosed where do my go or you know what to do next and we help outside that as soon as you get diagnosed with it then you go off and you do sort your own research so as you say we did feel a bit lonely even though it was my partner we both did a research together um but there was no one else to go to as no one else to talk to about it you know so this is ideal you know I think this is brilliant and hopefully new people that get diagnosed they'll see the group and think brilliant you know and hopefully new people will come along and we'll be able to share together and support each other you know perfect now Rowena if I can come to you so you're one of the people that listen to that initial interview and you've reached out um you know listening to the story listening to everything you know what was it like for you well it was I actually um it was very I just met my partner and he was newly getting diagnosed in the process um so it was like what is this I never heard of it before ever you know there's so many people that have it but I never ever heard of the word before you know so it was it was strange and like it was lonely that that's really what it felt like um there was nowhere to turn um so for me it's really important to get more support and more awareness on the island that's what I really want you know so people never feel like that again over here you know and how has having that you two seem like you support each other it's not just one-sided but you seem as though you know you bounce off each other and support each other how does it feel you know now having that person raising that awareness being able to do what exactly what you said you'd like to do yeah oh I think it's brilliant and you know I just think it's absolutely fantastic and you know she's very knowledgeable very cleared up um you know so I'm you know I'm chuffed that someone's there and I'm happy to support her um I didn't have the headspace to take on something like this on my own but I'm so happy to you know be alongside and help you know in the background and uh do the coffee morning that we're having and my mother-in-law actually owns the place where we're going so you know we can use that whenever we need to as well so we've got that space um if we need to change it obviously because there might have been some issues with them accessibility because of stairs but you know we can look into that in the future can't we yeah we were a little bit eager to to get going because obviously in the past you know they're doing the awareness in july was the biggest sort of deal over here now the meetings the big deal and we're like raring to go and we want to get out there we want people to meet us and and then we didn't you know it slipped our mind oh maybe some of our uh you know our listeners and some of those who were affected you know might have some mobility issues so obviously we're going to try and help those on the day but going forward we'll obviously have to address that in the long term she commented saying that she could look the rusties it was one lady yes plus yeah i've heard it before they do say that didn't it yes it's a term that many people affected by the condition uh call people who have it they go because obviously with iron and rust so we get called rusties um can i ask a little bit more about the coffee morning tell me about it is i understand it's the first meeting and what will kind of come out in the meeting for someone that's going to be attending what can they expect well uh basically it's just as it's our first meeting so we decided to do a coffee morning or an iron brew as across the uk um hemicromatosis uk often do them up and down the country we were just happy to call it a coffee morning we're wait um because that's what it is at the end of the day but they call them iron brews so i thought well we might as well call last iron brew and like the rusties it's an affectionate term so we're having it next a Saturday the Saturday the 23rd of November and as Rowanna said it's in her mother's guest house there and i hope i'm going to pronounce this properly the Waldick guest house is that right because i was a bit worried about i was going to get that wrong for anyone who doesn't know that's in peel and it's sort of on the promenade yes right on the end and that's 11 30 a.m and all are welcome and that's anyone who's affected by it anyone who wants to maybe learn something about it anyone that's maybe you know a relative or their mum's got it or their daughter's got whatever just anybody who wants to and basically um it's just an opportunity for people to come and share their experiences what they want out of a support group and they've got any issues they've had in the past whether that might be with testing diagnosis or you know the attitude of their doctors anything like that and um it's just an opportunity for people to say well this is what we want out of a support group going forward it's it's it's literally uh get together just to discuss ideas and thoughts and what you want and we are putting on tea and coffee and i believe you're going to you're you're you're more more generously giving us some biscuits as well oh yeah yeah so it's a nice effective biscuit thing box apparently um can i ask i know initially when we did the initial interview you said because there wasn't as much awareness on island at the time you often used to go to the hemochromatosis uk website for information um will this support group then kind of help in the sense that if people are unsure and aware you you know they can come to you and kind of get a little bit more guidance and support as well yeah we're hoping once we get set up and we get a bit more into it and a bit more clued up that we will be able to be sort of an all-rounder for the island i mean obviously there is something we really can't cope with and we will obviously sign post and we want leave people standing out in the colds per day we would do our best but we're hoping that people will you know come to us and they'd like to maybe would feel more comfortable coming to something on island because it's obviously that presence at home in the local community yeah i hope i hope people do reach out i really hope they do just you know just drop a message or you know you can actually just write on the facebook page and then you'll find everyone else sort of commenting you know i really hope people do do that that's what it's there for we we had um a lot of people come in and nobody was sort of chatting and maybe that's because they're just getting used to things and then we've had people who say hello now and introduce themselves and they tell us what our iron level is or when they got diagnosed and then we've had a couple of people i remember one gentleman a few weeks ago who asked you know what do people take when their joint pain is you know at them when their irons are iron levels up because obviously that's one of the symptoms and obviously we're not medical professionals we would advise people to go to the you know the GP and seek help but it it was nice and reassuring that this gentleman felt comfortable to ask in the first place rather than just sitting there suffering and silence and plus um you know you might something might work for you and that they hadn't thought of you know and they think oh well do you know i'll try it and and it does work you know suit that that's a sort of thing as well sharing um someone might have found something amazing you know and we don't know about it and when you're in pain you'd try anything of course yeah tell me a little bit more about the facebook page what's the name uh what do people search into our type in search to find it things like that so well all carillon set it up um so you add we're both admins um so it's manks hemochromatosis support um and it's an open page at the moment but we both we both manage it and anyone can add themselves to it you know so obviously i live with somebody i care about somebody who's got the condition it affects our family home carillon has the condition and even if you're interested in the condition you know there's there's because it's like a hidden disease as well um having more awareness on that you know for the likes of work and you know because they can't see what's wrong with you so they don't know why you've been so incredibly tired that morning you know i know it's um my partner nearly said his name um but i can tell when it's coming to the time where he needs to go in for his evening section because you know he gets incredibly tired and there's other symptoms as well that and then afterwards you know he's brilliant afterwards but it takes a little bit of recovery as well um maybe that's something we'll work on in the future i mean manks lore is obviously slightly different to uk law but it's pretty much similar and hemochromatosis really considered a disability under the 2020 quality and i don't think employers over here necessarily know that so which i'm sure they would be willing to obviously compromise with their employee individual employees and stuff but i don't think people they don't do they and to make that provision that to people i was just doing a bit of research i saw and thought oh my goodness you know it's actually wow there you go some conversations for one of the meetings um broken to carolina about her as an individual and what she goes through as someone who um as as a family member of someone who has hemochromatosis you know how vital is the support as well not only for the person but also for the the other people that lives with that person yeah no i think it is important because um as well as it being a condition you can't see um i have to always bring myself back and remember that as well because obviously when you you're someone you love someone you're just getting on your day today you then sort of forget and you get some i can get frustrated you know i can get frustrated now to bring yourself back and remember you know it's something he's suffering from just because i can't see it you know um so yeah um i think i've got everything i need anything you guys would like to add or say anything we must out uh yeah just that we uh i guess as well manx care it's uh we need something set up outside of manx care they are brilliant don't get me wrong we have the minisection team which consists of sofi and joe uh and i actually met sofi for the first time because she's been up there i think since january and i've never met i've spoken to many times on the phone and they've they've said they'll give their support to us as well and we have one we did have one consultant at nobels who kind of sort of specialized in the condition they actually took on i think three additional to help the workload which again also indicates that maybe there's a growing need for it and again they've said they're quite happy to help us but outside of manx care there's nothing so like this is again a reason why we feel that there's you know any and uh sometimes there's only so much that the doctors and the minisection can do because obviously at the end of the day they're having to do their job yeah have a time wise as well yeah no perfect um if i can ask just because you said you know um the manx care thing and um while manx care they do provide the service you'd like to see something more on the outside is that like kind of where you'd kind of work in line with manx care to offer that support the people need just i'm not just interpreting it i'd never really thought of that but we were discussing this briefly while we were waiting to come in and we were actually wondering if at the some stage in the future maybe there could be some sort of provision when people are newly diagnosed and they go to see the consultant or something like that and the consultant then signpost them to us so maybe there is that scope for us to sort of work in conjunction with manx care in the future but we'll just have to see where things go really thank you for making it to the end of the manx radio newscast you are obviously someone with exquisite taste may i politely suggest you might want to subscribe to this and a wide range of manx radio podcasts that your favorite podcast provider so our best bits will magically appear on your smartphone thank you you you [BLANK_AUDIO]
