Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: So hello and welcome to Let's Talk MCAS where we put all things mast cell under the ⁓ And today I'm absolutely delighted to be for our very first episode by Joy Mason, who is our incredible CEO here at Mast Cell Action. Welcome Joy.

Joy Mason, CEO, Mast Cell Action: Thank you so much, Deborah. I'm so excited to be here.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: I am too, I'm really looking forward to this conversation. So tell us then, how did you get involved with Mast Cell Action? Did you start as the CEO? When did you become the CEO? Tell us the story.

Joy Mason, CEO, Mast Cell Action: Yeah, sure. So I didn't start as the CEO. In fact, I was a volunteer right at the beginning and I'll tell you how that happened. So, Mast Cell Action was formed in December 2015 and we, I at the time had a very poorly daughter and I was looking for help and I came across a Facebook group which was run by Mast Cell Action and really it was right at the beginning where all we were was kind of a support group online. And I was looking for help, but I quite quickly realized that actually I was probably in a position to help people more than be helped. We were a bit further along in our journey. And so I started to kind of support people on the Facebook group. And that was January 2016. Then they were asking for volunteers to go along to medical conferences. We were attending the Royal College of GPs conference in Birmingham and I said, yeah, I'll come along and share my daughter's story. And so I did. And that really was the first yes that became the yes of many. So they then said, we'd be really interested in you getting involved a bit more and could you help out with this and could you help out with that? And before I knew it, I was attending the trustee meetings and was kind of getting involved in lots of different areas. And I continued to volunteer for a good few years until about three and half years ago when they invited me to be the CEO. So I've been leading the charity since then. But up until that point, we were all volunteers, mostly with MCAS or caring for someone with MCAS and, yeah, desperately kind of working away from our living rooms around people's... jobs and other commitments. So it's been quite nice to come over and have a bit more time to commit to helping people.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Well that's quite a journey you've been on there with the charity, you've grown with it. ⁓

Joy Mason, CEO, Mast Cell Action: Absolutely, yeah. It's funny because obviously my children were quite young when the charity, you know, when I first got involved with the charity, ⁓ I've watched the charity grow up along with them, I think, and seen ⁓ become something which ⁓ help and support so many more people, ⁓ is something I'm very proud of and I know the rest of the team are too.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, absolutely. So tell us what do you enjoy most your job? What is it that gets you up in the morning and gives you the most satisfaction about the work that you do?

Joy Mason, CEO, Mast Cell Action: There's many things I love about it. think the top thing for me has to be every day I get to come to work and help people just like us and make a difference in their lives. And I think that's a really incredible position to be in, to be able to help and support people who are having the same difficulties as us. And it means that even when things are tough or I've got to work really hard to try and overcome barriers. I'm really driven to keep fighting and I think that a really special part of being able to work ⁓ the role that I'm in. ⁓ also, I always ⁓ to people that the MCAS community is such an incredible place to be because everyone is so thankful for everything you do and any way that you can help them and any support you can give because... we're all so desperate and we've all been through such difficult times that even a tiny glimpse of light or somebody doing something nice really makes a huge difference. And I think that's a really special place as well to be in a place where there's so much gratitude for even the little things that we do. So yeah, I get to feel good about myself every day, which is nice.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, it's wonderful, isn't it? You get the feeling that you're really able to do something meaningful to help people. That's amazing.

Joy Mason, CEO, Mast Cell Action: Yeah. And I think as well, because a lot of my early work especially, some of my work now, but a lot of the earlier work was driven by wanting to help families not have to go through the really tough times that we experienced. So I wanted to put things in place to try and help them. And it kind of made it feel a bit less like we'd suffered for no reason because I could use what I'd learned to try and help other people, which I think is quite a nice way to look at it, that, you know, although we've had some really tough times as a family, that's enabled me to use what we've learned to help other people.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, absolutely. So you've obviously been quite open about the fact that you have MCAS, you have two kids with MCAS. Tell us a little bit about your health journey and how your family has got to this point.

Joy Mason, CEO, Mast Cell Action: Yeah, so we've probably got quite a weird journey, really, which I suppose is the same for a lot of us with MCAS. You know, we all, there's no kind of prescribed way in which we end up with a diagnosis or a potential diagnosis. You know, we all go through these different journeys. So the first person in our house to have MCAS symptoms was my daughter, and she was very, very poorly from when she was born. And I was a first time mum, and I knew that there was something wrong. I can remember taking this tiny baby to the doctor and saying, there's something really not right, something really wrong. They just kind of brushed me away and said, no, you're a first time mum, don't worry about it, don't think about it. It was a couple of years later that I was with a friend and my daughter was really poorly and I had come to think that it was normal. She was saying to me, what's wrong? Is everything okay? I said, ⁓ yeah, this is just normal. What's the problem? She said, no, there's something really wrong. You need to you need to try and keep going and try and get some answers. And I think that sort of renewed my fight to think, no, I've been told that this is normal, but I know it's not. And by that point, I'd had my son and at the time he wasn't poorly. So I was kind of thinking, yeah, you know, I know that actually something isn't right. And we started fighting, I guess. And we kind of went through all the systems that you go through and saw lots of doctors and had lots of tests and nothing really helped. And it wasn't until she was seven that she was diagnosed with MCAS. But by that point, we had nine different consultants. We were across four different trusts. We had no joined up care. She was on a diet of only two safe foods. Life was really, really tough and we didn't really have any answers. So that was a different journey to that of my son. So my son has EDS, POTS, MCAS and autism. And his early years were very much focused around his issues with his EDS because his hypermobility at the time, that was his diagnosis, caused lots and lots of different problems when he was subluxing, he was in a lot of pain, he was struggling with kind of fine motor movements. So a lot of our capacity to kind of deal with what was in front of us was focused on that for him and trying to help him with the most urgent issues he was facing. So looking back, he always did have some food intolerances, some environmental reactions, but he wasn't quite as unwell as my daughter. it wasn't until he was probably about seven or eight that I started to think, okay, yeah, I think we're seeing MCAS here. And at that point, we were very fortunate to have a really great pediatric doctor. And I spoke to him and said, you know, I think I'm seeing symptoms in my son. I can remember him saying, MCAS doesn't run in families, so he won't have it, but bring him in. We're an allergy clinic. We'll do some testing, and if it's not that, we'll work out what it is. And so I just thought, okay, well, it's not going to be MCAS. We'll, you know, take him, get the testing done. ⁓ then we went away for three months and we came back and he said, erm, okay, so he's got MCAS. ⁓ work out a treatment plan. And I was thinking, no, that's not what you said, you said it doesn't run in families, what are the chances? So he was 10 when he was diagnosed. So obviously they had quite a different journey. And then I was diagnosed post COVID. So if I'm honest with myself, when I look back when the kids were younger, I could see that there were weird things in my past, weird food intolerances, weird reactions to things, and always struggled with fatigue. I'd had occasional episodes of hives, quite random things, but I knew to be specific to MCAS. And I just always thought, well, I must be where it came from, but there's no need for me to do anything about it because I'm quite stable. And even one of my daughter's doctors at the time said, if you think you're having symptoms, we should really see if you need treatment and testing. And I said, no, there's so many people who... are much worse off than me who were really struggling, who were really struggling with symptoms. I don't want to take a spot in the clinic. So I'm fine. I'll just keep going. And then I got COVID. So it started with the COVID vaccines. I had the three COVID vaccines in a year. And every time I had a vaccine, I got shingles. And then over the next year, when I first caught COVID, I was really, really poorly. And I couldn't kind of bounce back from it and I had my first anaphylactic reaction, which was because I was stung by a bee. And overnight, I lost lots of foods. I had a huge kind of influx of inflammatory symptoms that I'd never experienced, but I'd seen in my children. And I was very fortunate. I consider myself very lucky because there were a lot of people in that position not knowing what was happening to them, but I knew what was happening. I knew that this had to be MCAS because know, what are the chances that it's something that looks the same but is completely different when it's obviously somehow in our family. So I ⁓ approached the doctor who'd helped get my daughter's diagnosis and I went through the testing and I was positive. So I also was then diagnosed with MCAS and I had a really rocky few years and that was really tough. But I'm quite thankful for it because it gave me a new perspective on things because I'd always found it quite easy to advocate for my kids. I'd always been quite a fierce mumma bear and I could ⁓ you're not doing that around my kids. They're not going in your car with your air freshener. You're not going to feed them those ⁓ ⁓ suddenly I had to do that for myself. And I had to say to some long-standing friends, ⁓ new friends that it's really difficult for me to be around you because you're wearing a perfume and it's making me ill or whatever it was. And that was a big learning curve for me. And it gave me a really helpful lesson in how much people, adults living with MCAS themselves can really kind of struggle with those things. And the other things that we have to fight through every day that are quite tough. ⁓ it was a really difficult time, but I am quite thankful that there were some opportunities for me and my personal development. came from that in being able to support other people. ⁓ So yeah, I was very fortunate to have great medication put in place that really helped me stabilize. And I put a lot of effort in to kind of learning as much as I could about my body and the way it responded to things and what I needed to avoid and how I could live the best life that I could, which meant making some sacrifices, taking some risks and trying to find a balance, which meant that I wasn't covered in hives all the time. And I don't get that right all the time. I still get it wrong and I still regret things and think, okay, yeah, that was a bad idea. But I think being in touch with my body in the way that I am and being attentive to its needs has been quite helpful in trying to manage the symptoms that I'm having. So yeah, it's a bit of a long story.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: ⁓ it is. It's a real journey, isn't it, that you've been on and you're kind of like, you've seen it all, haven't you? You are an expert in all areas of MCAS, paediatric MCAS, adult MCAS, in terms of your lived experience and what you've been through. And as you say, it's given you that insight and that understanding of what people go through, what parents go through, what you've been through. And it must really help to have that. depth of knowledge and insight now in the work that you're doing.

Joy Mason, CEO, Mast Cell Action: Absolutely. I think it's a real gift actually. I've worked in charities for years and to have lived experience and to just be able to answer on the spot. You if I'm presenting to an NHS team, which is quite common now, trying to educate or raise awareness about MCAS and they ask questions about what it's like to live with MCAS or, you know, the day-to-day life, I don't have to go away and find somebody because... I can answer some of those questions. And obviously, you I haven't had all experiences that everyone will have. And I think it's really important that everybody's voice is elevated. But I think it gives me enough to try and be quite emotive in our storytelling. And when I attend conferences, despite the fact that so much of the work I do now isn't about our experiences, I still share my daughter's story every time because it's the thing that I can talk about with most emotion and passion because we've lived those difficulties and I think that's a really powerful thing. And that's the great thing about Mast Cell Action, that more of us have MCAS and or care for somebody with MCAS don't. And I think that being that space where we all really understand makes it really difficult to go out for a staff dinner, but it makes it makes it. ⁓

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: So.

Joy Mason, CEO, Mast Cell Action: easy for us to be able to understand the needs of our community which is ultimately why we're here.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, absolutely. And you've touched a little bit on it, but your own health and the journey that you've been on to manage your own health, what have you found that has helped you the most? Are there any tools or tips that you really think have been foundational to getting your health in a better place?

Joy Mason, CEO, Mast Cell Action: Yeah, I think that's a really difficult question and I'm always very, careful how I answer it because I know having been in a very desperate position ourselves that sometimes we'll try anything because we're desperate for answers. So I'm happy to share some of the things that I found really helpful, but I really want to caveat this and say. everyone is so different. And, you know, there's three of us in our house and we all have different triggers. We have different treatments, different symptoms. Everybody reacts completely differently. And we can't kind of hear what's worked for somebody else and just go gung-ho and think that's going to work for us because that could be quite dangerous. I think for me, it was about initially I had to accept that I had to slow down. and try and listen to what my body was telling me because my body was kind of screaming at me that, you know, I had so much inflammation and I was having all of these symptoms. And initially you, well, for me, I tried to just keep going. And then I realized that I can't do that because there's not a medication for me that is going to just stop those symptoms and let me have the life that I had before. And in a way that's a gift because suddenly when you've got less energy, you get to be bit more picky about the things you do. And for me, I kind of thought, actually, you know, I've been trying to keep up these friendships and it's really hard work. And actually I've got these other friendships that are much easier and they kind of get me and they see where I'm at and they see the difficulty that I'm having and they're willing to make sacrifices. So I think it was about kind of assessing everything that was happening in my life and just kind of working out what my priorities were in where I spent my energy as well as what was happening with me. And then in terms of actual symptoms, I have tried loads and loads of things. It's a blessing and a curse to be inside Mast Cell Action because you hear about all the things that have worked for everyone and obviously they're not all going to work for you. And you go through my husband for a while, bless his patient socks, was like, what is it you've got now? What are you doing now? because I went through all these different things over time. But I found the things that really helped me, it's really important for me to think about my wellbeing and to try and do things that help me to feel well. And I have found certain things that really support me with that. So infrared sauna is one of them. I now have an infrared sauna bag and I try and do at least one sauna a week. If I'm reactive, I'll try and jump in a little bit more, maybe do an extra 10 minutes here or there. I find that that really helps. I have tried acupuncture, which I found really helpful. I don't know if it was just the sort of stress relief aspect or, obviously from a medical point of view, I don't know if it kind of alleviated symptoms, but I think it helped with my overall wellbeing, which helped relieve stress, which then obviously helped to sort of relieve my histamine bucket. Having the right medications in place was obviously key and that really, really helped, especially at the beginning of the journey. But I've now been able to reduce some of those medications with kind of the other things that I've got in place. Managing my diet has been another one and that was really difficult. My daughter's not always very forgiving because she's been through really tough times and if I'm having a bit of a moan, she'll sort of tell me that I should pull my socks up and... and not feel sorry for myself. So I can remember standing in the kitchen, I'd eaten something that I knew I probably shouldn't eat, was hoping that my body would accept it. And I was all itchy and hive-y and flushing and a bit swollen. And she's like, well, why do you keep eating it? Why? And, you know, it wasn't very understanding or forgiving, but I think it kind of reflected to me and I thought, actually, why, why do I keep eating it? I know I really like it, but is it worth it? And so I kind of gave in. to what my body was telling me not to expose it to for a while. And I found that over time, I was able to kind of tolerate those things in smaller amounts again and build up as I kind of healed, I guess. But for me, it's also very important managing my stress levels. I mean, I'm obviously in a very stressful job. I've got two very poorly kids. We've got three dogs, two cats, a huge number of things going on in life. And it is stressful. life and I know that stress is something that really triggers me so I need to try and find ways to relieve that a little bit and you know for me that's just taking a little walk sometimes or sitting in the garden getting a bit of fresh air just something that kind of breaks me out of the the mental stress of being in that same position of okay I'm in this fight mode all the time because that that can be what it feels like so I think I guess the answer is for me, there's loads and loads of different things that have come together. It's not one thing that has been like a magic door. There's been lots of things that I've tried that haven't worked, and then there's been things that I tried and I think actually I think I'm getting some benefit from this. Our virtual massage sessions with the lymph drainage were brilliant. The first time I did that session, I had a horrible headache for three days afterwards. and we felt that maybe that was like some kind of blockage or, you know, was there a, I had this kind of backup and I needed a bit of drainage. So I went a bit easier from that point, but I started to feel better after the session. yeah, lots and lots of different things that I've tried and not everything's worked for sure, but those are the things that I think have kind of made a difference for me.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Well, thank you for sharing. I think that personalised individual approach is the key, isn't it? Everybody's different. We're all so But that ability to listen to your own body and become more aware of what it's asking for. And as you say, I don't think there is one magic door. There isn't one answer for everybody, is there? But there's always a selection of different things that we can find. If can find your selection, ⁓ it really help, can't it? Definitely. And we've got a lot of wellbeing resources that we've made available through Mast Cell Action and we all really feel that that's an important part of the journey is looking after your wellbeing and your mental and emotional health. And I think for a lot of people, maybe they don't understand the reason why that is and maybe they think that it's more important to focus on the physical and get the drugs and the medication. But that whole stress management and wellbeing and mental health is so important as well, isn't it?

Joy Mason, CEO, Mast Cell Action: Yeah, absolutely. And I know it can be quite triggering for people to kind of talk about mental health. And as a society, we're getting better at it. As an MCAS community, I think it's quite triggering because we've often been through quite difficult times. So I can remember, you know, early days with my daughter, accusations of, is this in her head? Is she attention ⁓ And that's hard enough to hear about your child because you have to make a decision whether you believe the doctor or you believe your child. And I decided at a very young age that when she was very little that I never wanted her to be able to turn around and say, I was in pain, I suffering and you didn't believe me. ⁓ So always believed her, which is a bit of a gamble, I guess, when, you know, kids can tell you all sorts of fabulous tales. But ⁓ I wanted her to feel that I was in her corner and that I believed her and I understood what you know, or tried to understand what she was going through. But I think a lot of adults in our community have also been through that experience where they've been told this is in your head, it's not real, this can't be happening to you. And so when we start to talk about mental health, it's quite triggering because it can feel like that's what we're saying. And I think it's really important to distinguish that there is a distinct difference between those messages and the message that we feel is really important at Mast Cell Action, your wellbeing ⁓ care of yourself and looking after your own wellbeing is such an important part. It's an important thing to do anyway that we're not necessarily very good at as a society. ⁓ But think ⁓ when struggling and also for parents out there, know, when you're looking after ill kids, ⁓ you last quite a lot of the time. And ⁓ really to try and find a little bit of time to look after yourself and take care of yourself because ultimately, what's the saying? You can't pour from an empty cup. So, you know, I think as adults living with MCAS, it's, if nothing else, you know, that kind of grounding moment to give us a little bit of, erm, self-awareness about where we are with our own wellbeing and just... the importance of taking care of ourselves, I think that is really, ⁓ an important message for us to share that, you know, it's ⁓ to do the right thing for you. It's okay to say no, and it's, you know, important to really take care of ⁓ yeah, hopefully ⁓ ⁓ see the difference in those messages because I would hate for people to think that we are promoting anything other ⁓ what it is that, you know, wellbeing is important.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, absolutely. And it is stressful and even traumatic, isn't it, to go through living with MCAS and to experience what we experience. So it becomes even more important then to take care of your mental health and your emotional well-being as part of that, because stress is a real MCAS trigger, isn't it? It actually does cause us to have physical symptoms. So the more we can do to manage it, the better in the same way as we manage our diet or any other trigger.

Joy Mason, CEO, Mast Cell Action: Absolutely, and I think it's really funny. I've got this really, the moment that I realized how much stress has impacted my MCAS, on a Saturday night we were watching, I can't, don't remember what it was. There was a program on the telly, we wanted to watch it live and we'd been watching it every week. And husband had gone to pick my son up from somewhere and daughter was doing something in the shower, I don't know where. And I cooking a meal and I was trying to get the meal ready so that we could eat when everybody got home and when the program was on so we could watch it live. But food in our house is not simple, as you might imagine, with three people with MCAS and my husband is a fussy eater, bless him. So I was cooking four different sets of fajitas. We'll call them fajitas, but at least two of them didn't even resemble anything like a fajita. And certainly there were no spices. And we were I was trying to get, I had these four pans and I was trying to get everything in at the right time and get everything all cooked and to the right level. And I was getting more and more stressed that I was thinking, my gosh, and certain things happened - you know, the doorbell rang and I had to go and answer the door and the phone rang I was trying to get the telly on and get that ready. I could feel myself getting more and more stressed. And I thought, Joy, used to coping with such stressful situations, why on earth are you getting so stressed about this? ⁓ I suddenly, I could feel the stress building in me and the heat building in me. And by the time my husband got home, I was bright red, swollen and had hives all over my neck. he was like, what on earth happened? I was like, I was just trying to cook with the fajitas. And I think to me, that was a moment when I could really visibly recall that I can see what stress is doing to me. And we don't always see it because often we're caught up in that stressful moment, but because it wasn't. It wasn't real stress in a kind of day to day, it was something that I was just getting myself in a tizzy about in the moment. It's quite a clear picture for me how stress can really impact my symptoms. And so if that's invisible stress and it's kind of building day to day to day, and then I and then I'm suddenly like, I'm covered in hives, why is that? But I've not really realized I'm stressed. Then, ⁓ you I think it's, that, for me is quite an important thing for me to be mindful of as well.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Absolutely. It's so interesting, isn't it, when we start to see those patterns and see those triggers become visible, it gives you a sense of how you can maybe get some control back and maybe understand your body and know how to support it. Yeah.

Joy Mason, CEO, Mast Cell Action: Absolutely. So that's really hard, isn't it, identifying the triggers and trying to work things out. And, you know, that is such a difficult journey to go on. But once you start to spot a few, it starts to get a little bit easier, I find. I mean, there's always new ones that pop up and new, exciting things that happen. And we realize that there's something new that we can't tolerate. But I think when you start to get a handle on some of them, it just gives you a little bit more control.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: It does, absolutely. Yeah, it's like a detective story, isn't it? We've said before, you're like MCAS detectives. You've got to work it out.

Joy Mason, CEO, Mast Cell Action: Yeah, absolutely.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: So let's talk a bit about Mast Cell Action now in a bit more Tell us, what do we do at Mast Cell Action? And if people are interested finding out more and getting involved, what can they do with us as a charity?

Joy Mason, CEO, Mast Cell Action: So we are still quite young really as a charity, but I think we pack quite a punch, that we're a very small team and we've got a massive volunteer team who are absolutely amazing. So if you're interested and you want to help get in touch because there might be something you can do to support. But we doing all sorts of things. Our community support work has really kind of got off the ground in the last couple of years and we do a lot of virtual events ⁓ there's a lot of resources that are there as direct support for people. And we put those into place because we recognise that there is an immediate hole that needs filling. we recognise that we need to work on medical engagement and research and developing guidelines and training. And there's a lot that we need to do in the medical space. those are quite long projects that take a lot of time. And in the short term, actually, we need support in place for the people who are really struggling. So we built peer support service, we built our virtual events program, ⁓ we've got a lot of resources on the website which are designed to help with all different aspects of life with MCAS. There's resources, but there's also resources like our ⁓ managing, reasonable adjustments in the workplace or our freedom kit for schools. There's all different resources so you can choose what is relevant for you and what you need help with at the time. And those are continuing to grow. So we're continuing to work on and develop new resources and support. So you can find the information for that on the website. Can we put a link in the podcast? That would be really helpful. So we can put like a link to the events and the resources so everyone can take a look at those. And then... Our medical engagement work is growing again. So we purposefully chose to focus on the community for a year or so just to really get that off the ground and get a good team in place. And now we're delighted to be attending medical conferences again and working with NHS teams and trying to raise awareness and educate. We've got quite a few medical lead volunteers and they work on different projects which will make progress in different areas. So we've got one medical lead who's working on different symptom areas of MCAS and looking at all the different symptoms that you can have and any research about the different body systems. So we hope that'll be really helpful if, for example, you're seeing a neurologist about headaches or brain fog or whatever, erm, that they will be able to quickly access any information that is available about that area. So they're working on that. We have our medical advisory board and we will go out to them with projects and papers and resources and ask them to feedback and steer. So we've got some doctors guiding our work, which is really, really helpful. In terms of future plans, we have some really, really exciting projects coming up. So I think One of the most exciting projects is that we have been approached by an NHS team who want to be the first MCAS accredited NHS team. And that is obviously really exciting because we want loads of NHS teams to really know lots about MCAS and we've got lots of information to share with them. So we are working on designing an accredited training program, which we hope to have CPD accredited, which will then be available to roll out. across the country and help us awareness with different teams in the NHS. ⁓ that's a very exciting project. ⁓ yeah, we've got loads and loads of different projects going on. ⁓ much so that we probably don't shout about the little things enough because we kind of do them in such a way that we don't always recognise, you know, that there's an opportunity to share things because we're so busy and there's so few of us. But there are lots and lots of things on the website about new things that are happening. The best way, I think, to keep an eye on what's happening is our social media channels, because if you follow us on there, you will see all the exciting things that we're up to.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, absolutely and people can also sign up to be on our newsletters as well, can't they, if they want updates and information. So please do look at that on the website. But yes, I think there's so much excitement and positive things happening behind the scenes that people don't always realise how much work you in particular are doing with the medical community. So yeah, it's great to hear that that's happening and that there's progress being made. Yeah, it's really exciting and hopeful for the future, isn't it?

Joy Mason, CEO, Mast Cell Action: I think that's it, there is hope for the future. It's 10 years since I started this and when I first went to conferences, I didn't have much luck talking to people. They weren't terribly ⁓ But that's changed quite a lot and I've seen in the last year or ⁓ there has been a ⁓ sea change ⁓ kind of doctors' interest and engaging with us. And I think that's a really important message for the community that as much as sometimes the... the progress can feel very slow and quite painful, we are seeing progress and I think that's a really great thing to acknowledge and we're really excited. So by the time this goes out, we will have been to the Royal College of GPs conference and the BSACI conference, which is the Allergy and Immunology conference. So really excited to go and share resources and some new papers ⁓ make some new friends and hopefully we'll... ⁓ have some great results to share from that with you guys as well.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, it's all exciting. Progress is happening. And that kind of touches on my next question really, because, you know, I was going to ask a little bit about what changes you have seen maybe in the last year or two within the charity and also externally, and maybe what you're hoping for for the next couple of years. What's your kind of vision for where the charity is going and what's going to happen? What's the priority?

Joy Mason, CEO, Mast Cell Action: That's a great question. mean, when I look... three years ago, it just me ⁓ with volunteers. I was on my own and ⁓ a of different hats and just trying to keep everything off the ground really and help as many people as I could. ⁓ So the changed quite a lot since then. We've now, there's now four of us who are all employed time. ⁓ But we've also some great consultants that work with us as well. So we've we've kind of got a team together in the, you know, everyone has a different area that they focus on we're able to really make change, which is ⁓ lot easier than it was, you know, when you've got one person kind of trying to push through with lots of different things or lots of volunteers, you know, change is much slower. So it's been really nice for me to see things move more And also there were things that were on my wishlist then, which I kind of thought we're never ever going to get to those things because they just seem so far away when I look at our list of priorities. So it's really nice to see some of those things moving along now as well. The beauty of having a bigger team is that we can have more volunteers because obviously our volunteers need support and guidance and there's a limit to how much each person can kind of do that. So it's been really nice to have a slightly bigger team to enable us to grow our volunteer network as well. Our trustee board have changed quite a lot actually. Up until a few years ago, we still had two founding trustees as part of the board. There's now only one founding trustee left who's now our chair, but we also have some other new board members who've come in with their expertise and kind of different areas of experience, which is really helpful in the governance and strategic planning for the charity. So that's been a a great change. Externally, I guess, I think we're seeing more and more people suspecting they have MCAS or diagnosed with MCAS. In terms of community, that's grown quite a lot in the last few years. The amount of people that we're engaging with and the amount of people that need support. And that's become especially true since COVID. We know there's lots of people with long COVID who are accessing our support and who are coming to us to try and get answers. And we are doing our best to kind of support people as that community grows. We, in terms of what I want to see, well, in an ideal world, Deborah, I'd love to see a much bigger team so that we can do even more. reality is, you know, we're a very small charity and we have resilient income in place. And that is of what we need to do in the next few years to be able to grow even more, so, ⁓ I think, that's the most worrying thing at the moment is, you know, just trying to kind of keep the lights on. And so that community fundraising is really important to us. It's been great to see people start to run marathons for Mast Cell Action and do some incredible things. I love seeing the creativity of people in our We had one lady who did a swim and had a parachute attached to her to represent the drag that you get when you're swimming with MCAS. And it was such a poignant moment for me because I knew exactly how that felt. I could imagine that swim and trying to kind of push myself through the water when you're wearing concrete boots because I've experienced it. I love watching what our community come up with and seeing that kind of creativity. That's really exciting. So hopefully we'll see that grow in the next few years. And as our income grows, we will hopefully be able to expand the team, which means we can do even more. Our community support can be strengthened, but we can do much more medically, ⁓ that really is the area, you know, if we can bring anybody in to support with those key projects in the next couple of years, it will mean that they move much faster. So lots and lots of exciting things on ⁓ agenda, but it's about doing it in a sort ⁓ safe and responsible way as we grow.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Absolutely, it's got to be sustainable, hasn't it? Because we want to be here for the long term. But when you think how much has changed in just the last couple of years, it's exciting to think what could be happening in another couple of years.

Joy Mason, CEO, Mast Cell Action: Absolutely. And I think the sky's the limit with MCAS really. There's so many different ways that we can help people and there's so many different ways that we can make a difference. And we've seen that in the past few years where we kind of try something and we're not sure if it's going to work and then it's a huge success. And we think, actually ⁓ so much more we could do there. ⁓ I think that's, in a way, it's the sadness but also the beauty of MCAS that it impacts so many different parts of life that there's so many different ways that we can make a difference. And I hope that we'll be able to continue to grow and be there for people in and more ways as we and change in the next few years.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, absolutely. So you've shared a lot about the difficulties that you've faced and all of the different things that you're juggling. You've got two kids with MCAS, you have MCAS, you're our CEO, which is a huge responsibility and an awful lot of work. And you live a life as well. You've got all your household stuff to do like everybody else does. How do you cope? Because some days that must feel completely overwhelming and you could sort of be kind of drowning in the negativity and the difficulty of that situation. How do you cope with all of that?

Joy Mason, CEO, Mast Cell Action: I think for me, I'm quite a positive person, which I think helps. And I tend to try and see positives in situations. But I have to say, I've got friends right now who are really struggling with rebellious teenagers having a really tough time and parents having a tough time, as are the teenagers. And I look at my own kids and I think, we're not going through that really in the same way, because they're quite ill. They rely on me quite a lot. but it also means that we've got a very different relationship. And I see a real positive there. I see almost a gift that's been given to our family, which is a closeness, which we wouldn't have had without MCAS. You know, I don't think we would have had the relationships that we do have. And I think, I know that that isn't the same for everyone. I know sometimes relationships can break down and can go through really difficult times, but I think where relationships come through, ⁓ can see ⁓ the small wins, I think that's really valuable. So for me, just having my family all well enough to sit on the sofa and watch something on the TV together is a bonus. ⁓ ⁓ I'll take that as a win. ⁓ I think that's a gift to see something so small as a positive. ⁓ I try and find the positives in the little things. That and humour. We have developed an incredible sense of humour around MCAS. And I think for us, finding that humour in those situations has actually been a brightness in the dark. And I think if we can find any good in what's happening, then it can just help us to get through it. Humour is a great coping mechanism. It's definitely something that we enjoy in our family. And it's a huge stress relief as well. We love to laugh. We love to prank each other and do silly things. It's just a little way that we lighten, lighten some of those darker moments, just finding a little bit of humour. So I'd love to hear how you guys do it. You know, if there's just a little bit of fun to be found because we have to, right?

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Absolutely. I think for us, we find humour in all sorts of things that other people perhaps wouldn't find humorous, but you have to find that resilience, don't you? And it becomes almost, you have to laugh or you'd cry. And so you have to turn it round and find ways to, it's a dark humour sometimes perhaps, but it is, you have to be able to laugh, don't you? And find the joy and the happiness and the laughter. even in the difficult times. Absolutely.

Joy Mason, CEO, Mast Cell Action: It's a great release as well, laughing as well. I really like to see live comedians. That's one of my huge stress releases, me and my husband, er, when we can, we'll try and go and catch somebody. And I love the fact that we're basically paying someone to make us laugh. I just think that's the best thing that I can do with my money right now is just give it to you and you'll make me laugh. I think that's an amazing gift to be able to give someone the gift of humour. So yeah, we maybe need to try a little bit more of that on social media. Should we see if we can pull out some more humour? See how people, if people like it.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, joke telling webinar where we tell jokes.

Joy Mason, CEO, Mast Cell Action: That's a great idea. Maybe see if we can get a comedian to do. We did have a, we had Craig Revel Horwood do a community message, didn't we, a couple of years ago. I don't think it was funny, but his pronunciation of MCAS was quite funny.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: It was very funny, yeah. Yeah, we all need some more humour. The best medicine, they say, don't they? And it is absolutely true. So finally, tip. What would you, if you could give one tip to people who have maybe been diagnosed with MCAS, people who are listening and maybe think that they have MCAS ⁓ or who are struggling whilst living with MCAS, what would be your biggest piece of advice that you could give?

Joy Mason, CEO, Mast Cell Action: I'm going to give two tips. Can I be naughty? Yeah, go on.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: As you're the CEO, you can have two.

Joy Mason, CEO, Mast Cell Action: I would say be kind to yourself and take things slow because I wish I'd done both of those things early in the journey and I'm learning. I'm learning to do those. I'm not naturally a person who takes things slow. I tend to gallop in all the different directions in one go and forget I've left my horse behind sometimes. But, you know, I can remember coming home when my daughter was first diagnosed and going through my house with a box because I was told the fragrances and chemicals and you you're told about all the triggers. So I got this huge box and I went through my house and I put everything in - shampoo, conditioner, washing liquid, washing up liquid - anything that I used in house. And I took it out of the house and I came back and I thought, my gosh, I don't even know how to wash my hair. And it took me weeks before I had things in place because I just kind of went full throttle, go for it. But the danger with changing everything like that was I didn't know what had helped or what was working or what wasn't. And actually I've learned with time to just take things a little bit more slowly adjust just one thing at a time, try and put one foot in front of the other and gradually you kind of move forward even though it's a bit slower. And be kind to yourself. The world is mean enough to us and... sometimes we can be quite mean to ourselves in trying to push ourselves into do things or beat ourselves into accepting things. And actually, if we just show ourselves the kindness that we would to other people, I think it might be a bit better for all of us. So we should show just a little bit more self-kindness and self-compassion.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Absolutely, 100 % I agree with both of those. They're both great tips. Although I have to say that none of us at Mast Cell Action have noticed that you slowed down at We don't know how you do what you do because you work hard and you do so much and single-handedly drive this charity forward with your energy and your ⁓ and yes, you do so much.

Joy Mason, CEO, Mast Cell Action: Ah, that's lovely, thank you. Well, you know, think ⁓ what a better place to be than, you know, to be in a place where you've got an opportunity to do that. But I know it's, my husband does wish I'd slow down sometimes. I consider me now the slower version, so you should have met me before. I've been referred to as the Duracell bunny multiple occasions. ⁓ But yeah, do. I ⁓ I'm quite a passionate person. I'm quite excited about things and I want to. I want to do things today and get them fixed. And sometimes that's really tough. when there's passion behind a project, there's momentum and other people get engaged and involved and they want to join as well. So I think that's one of the beauties of Mast Cell Action, that we're all so enthusiastic and excited about the work that we're doing. And I think that's really powerful. But yeah, I'll try and slow down because I know I quite often throw things at you, Deborah, and you're like, no, make it stop.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: We're all working hard because we all care and we're all motivated to make those changes, aren't we? absolutely. It's the best team. Yeah. Yeah, ⁓ Well, it's been an absolute pleasure to chat with you, Joy. Thank you so much for sharing all of that. We really appreciate it. And I hope that everybody listening found something useful from that and has got something that they can take away from that conversation. So thank you so much.

Joy Mason, CEO, Mast Cell Action: Thank you so much for having me. I can't wait to hear the other episodes.

Deborah Bircham, Community Support Co-ordinator, Mast Cell Action: Yeah, I'm really excited for the rest of the podcast. So tune back in and listen to some of the other guests because we've got some amazing people lined up. Thank you so much Deborah. Take care. And you. Thank you. Thanks so much for today. ⁓ If you enjoyed this conversation, don't forget to follow the podcast so you never miss episode. ⁓

Joy Mason, CEO, Mast Cell Action: Thank so much, Deborah.