Our stories
Living with MCAS can sometimes feel isolating, particularly when the impact of the condition is difficult for other people to see or understand. Members of our community have generously shared their experiences of living with MCAS - the challenges they have faced, what has helped them, and the things they wish others understood.
Every experience of MCAS is different, but hearing from someone who understands can remind us that we are not alone. There is no single experience of MCAS. Symptoms, triggers, diagnosis, treatment and the impact on everyday life can vary enormously from one person to another. These stories reflect individual experiences of MCAS. What helps one person may not be appropriate for another, and personal experiences should not be treated as medical advice.
If you have questions about your symptoms, treatment or medication, please speak with a qualified healthcare professional.
You do not have to navigate MCAS alone. Mast Cell Action offers information, resources, community support and services for people affected by MCAS and those who care for them. Find out more about the support and services we offer here.
If you would like to talk to us about sharing your story, please get in touch.
You can also watch recordings of our members of our community sharing their stories on our Youtube channel here.
Help more people feel less alone
Sharing lived-experience is an important part of helping people affected by MCAS feel seen, understood and connected. Your donation could help provide support, create trusted resources, raise awareness and give people affected by MCAS a stronger voice.
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Our stories
Charlotte's Story
Charlotte has been living with Ehlers Danlos Syndrome, which she was able to manage well until 2020, before she had any MCAS symptoms.
Read Charlotte's StoryBianca's Story
In 2013, Bianca began to experience MCAS symptoms while training as a Dietitian at King’s Cross Hospital.
Read Bianca's StoryTasmin's Story
Since she was a young child, Tasmin has experienced allergic reactions to medications, cleaning products and foodstuffs. After having problems with her periods, she identified that hormonal factors were behind her symptoms despite being labelled with simply having panic attacks at A and E. Her MCAS diagnosis, obtained through both private and NHS channels, equipped her with a practical and emotional toolkit to tackle the condition and improve her wellbeing.
Read Tasmin's StoryIvy's Story
Ivy had always experienced allergic symptoms. When they flared up in 2018 it took her a year-and-a-half to get diagnosed with MCAS, following both private and NHS consultations. Here she explains how she got positive results through being persistent and relying on her own willpower and strength of purpose.
Read Ivy's StoryDaisy's Story
Daisy has experienced allergic reactions since she was a child, including to many foodstuffs. She was pushed from pillar to post when seeking medical help as an adult, and only obtained a formal MCAS diagnosis from a consultant in Italy after multiple UK health professionals failed to properly understand the condition. Now she benefits from Jarvis, her Medical Alert Assistance dog who alerts her to triggers before a reaction starts.
Read Daisy's StoryJulia's Story
When Julia’s MCAS worsened leaving her with severe allergic reactions, she didn’t feel that what the Doctors were offering her was very helpful. So she carried out her own research, putting in place successful self-care strategies including proper hydration, mood management and respecting the body’s circadian rhythms. She is now drug-free and keen to share her story to inspire others.
Read Julia's StoryBeth's Story
Beth, a member of our MCAS Young Voices Group, is now a thriving 21 year old University student, but she has endured debilitating symptoms her whole life.
Read Beth's Story
Sonny's Story
Sonny's symptoms started in April 2022 after getting a virus that seriously affected his immune system. His Mum shares his story.
Read Sonny's StorySophie R's Story
Sophie was a fit and healthy 19 year old, loving and living life, until one day she blacked out and her life changed forever. Despite all she has been through, Sophie and her husband are getting ready for a 120km trek in September from Portugal to Spain.
Read Sophie R's Story
Millie's story
As a newborn, Millie was sick after every feed and screamed a lot, clearly in a lot of pain. As she grew older, Millie’s symptoms progressively worsened, causing every aspect of her life to be meticulously planned to avoid her triggers and these symptoms. Millie’s mum helps to share her story with us.
Read Millie's storyCynthia's Story
Cynthia has battled allergies and severe reactions for all of her life, in 2018 after a lifetime of acquiring new triggers and diagnoses of different conditions, she was diagnosed with MCAS and has realised the importance of community when it comes to navigating life with this condition
Read Cynthia's StoryJensen's Story
After 4 years, 3 allergists and 2 dietitians, Jensen eventually saw a doctor with experience of MCAS. Although his symptoms are mostly under control, he still suffers from pain and urinary incontinence.
Read Jensen's StoryKellye's Story
Kellye went through early life never experiencing any health issues outside of typical environmental allergies, however everything changed at age thirty-five and Kellye has since battled with a spontaneous leak of cerebrospinal fluid, escalating MCAS symptoms, and being accused of exaggerating her symptoms by family and medical professionals, until finally getting her diagnosis.
Read Kellye's StoryMia's Story
Despite being only 20 years old, Mia has already had to face numerous life-altering experiences as a result of her MCAS, and has had to fight to be taken seriously by medical professionals because of her age. Nevertheless, she is committed to using her own experiences to assist others who, like her, are struggling with MCAS and are in need of support.
Read Mia's StorySophie's story
Sophie is 23 years old and has suffered with various debilitating symptoms since she was a baby. It was only when Sophie moved house recently that she began to feel listened to by doctors. Now, Sophie finds comfort in knowing that she is not the only one to experience these issues, and believed every day is a learning curve.
Read Sophie's storySuzie's Story
Seven years ago, Suzie was approaching the height of her music career, about to be signed and working with some incredible song writers. In 2016 her life completely changed after a severe allergic reaction that led to the onset of her Mast Cell Activation Syndrome, as well as the decline in her gigs and opportunities. Since then and with the support from her partner and parents, Suzie has been able to accept her new life and everything that has come from her tumultuous journey.
Read Suzie's StoryAlyssa's Story
Doctors repeatedly put Alyssa’s symptoms down to anxiety, and made her feel like she is making them up.
Read Alyssa's StoryClaire's Story
Before being diagnosed with MCAS, Claire had never heard of the condition and didn’t even know what a mast cell was. She hopes that in the near future there is more recognition of Mast Cell Disorders.
Read Claire's StoryLucy's story
Lucy is 44 years old and a dedicated mother; although her journey has been long and difficult it has taught her a lot about her body, inspiring her to retrain and become a health coach to help others.
Read Lucy's storyMegan's story
As a child Megan had mild allergies to hay and tomatoes, suffering from anaphylaxis for the first time as a teenager. Now she is wheelchair bound, has faced death several times and is fighting for more awareness of her condition.
Read Megan's storyA wonderful member of our community has kindly shared their story with us. You can read 'The Maze of Illness' here.
"Thank you so much for your detailed response to my query, you’ve actually brought me to tears. To have someone understand and send something helpful is just an entirely new experience, when it comes to reaching out for support with the myriad of symptoms I have. Thank you so much for the advice and support."
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