Our stories
Some members of our community have kindly offered to share their stories to support other people living with MCAS. Hearing about the experiences of others can be helpful as we navigate our own journeys.
We are always happy to hear more stories from our community. If you would like to talk to us about sharing yours, please get in touch.
Our stories
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 Story
Sophie R's Story
Sophie was an ordinary 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 storySara's Story
Sara is 56 years old and has suffered from swelling, joint pain, and the feeling of her joints being on fire since she was a child. But always dismissed her symptoms as growing pains or a result of surviving malaria and amoebic dysentery at 6 years old.
Read Sara's StorySuzy's story
Suzy was a busy working mum before she had an operation to remove her gall bladder, then her life changed overnight
Read Suzy's storyBecky's Story
This week I am celebrating a hard-won victory. In front of me I have a plate full of broccoli and green beans, and I‘m about to eat the lot.
Read Becky'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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