Support for Young People
What are Mast Cells?
Imagine you have these special blood cells called 'mast cells' in your body. They're like tiny defenders that live in all your body parts. Their job is to help your body stay healthy, especially when something bad like an injury or an illness happens.
When there's a problem, like a cut or a germ trying to make you sick, these mast cells get super active. They release tiny chemical messengers called 'mediators.' Usually, this is a good thing because these mediators help your body fight off the bad stuff and make you feel better.
But sometimes, in some people with something called 'MCAS,' these mast cells get a little too excited. They release those mediators way more often than they should. And when that happens, it can cause all sorts of problems in different parts of the body, making you feel sick in many ways all at once.
Triggers
If you're dealing with Mast Cell Activation Syndrome, you probably know that certain things can set off your symptoms. But here's the thing – it's not always easy to figure out what's causing those reactions because there can be lots of triggers.
To uncover what's causing your symptoms, it's a good idea to keep a diary. In this diary, jot down stuff like the foods you eat, any chemicals or fragrances you're exposed to, how stressed you are, changes in temperature, and your exercise routine. By doing this, you might start to notice patterns or things that seem to be connected to your reactions.
Here's the deal though: what triggers you today might not be the same as what triggers you tomorrow. It can change over time. So, if you run into problems down the road, don't hesitate to restart your diary.
Also, don't go through this alone! Share your triggers and symptoms with your friends and family. They can help you manage and steer clear of your triggers.
In a nutshell, keeping track of your triggers and involving your loved ones can make dealing with MCAS a bit easier. You got this!
Symptoms
Living with MCAS can be tough. It brings a bunch of not-so-fun symptoms that can affect different parts of your body all at once. Sometimes, these symptoms can be mild for a while, and then suddenly get worse. It's like they have good days and bad days.
Sometimes, something specific can make the symptoms go crazy, like a really bad infection or a medical procedure. It's a bit like pressing a button that makes everything worse all at once.
MCAS can have a big impact on the lives of the people dealing with it, as well as their families and caregivers. The symptoms can be pretty serious, and it's hard to predict what will set them off.
If you're going through this and the symptoms are getting to you, it's a good idea to talk to a doctor. They might be able to help. Some people with MCAS say that when they get their mast cells under control, their symptoms get better. It might also help to keep a diary of your symptoms so you can show it to your doctor and they can understand what's going on better.
Managing MCAS
Right now, there's no cure for MCAS, which is pretty sad. But the goal of treatment is to make the symptoms less severe and make life better.
There are two main ways to manage the symptoms. First, there's what you can do yourself, and second, there are medicines. Usually, it's best to use both to control MCAS symptoms.
Taking care of yourself: Avoiding things that make your MCAS act up is super important. If you know certain things, like certain foods, chemicals, exercise, or stress, make your symptoms worse, try to stay away from them as much as you can.
You might need to follow special diets, like a low histamine or FODMAPS diet. Some people even have to combine a few diets, and that can be tricky. If it gets confusing, talking to a dietician or nutritionist who knows about MCAS can help.
You also need to watch your surroundings. Some things like scented stuff (candles, perfumes, air fresheners) and some cleaning products can set off your MCAS. Keeping your home free of these triggers can help a lot.
But here's the thing, some triggers are hard to avoid, especially in public places. Also, some medicines, like codeine, can make MCAS symptoms worse. And some people with MCAS do better when they avoid drugs like aspirin or ibuprofen. Figuring out what sets off your MCAS and what medicines to stay away from should be done with a doctor's help.
A lot of people feel way better once they figure out their triggers and avoid them as much as possible.
Getting help from medicine: There are different medicines that can help with MCAS symptoms. Some make your mast cells, those troublemakers in your body, chill out and not react so much. Others block the chemicals that mast cells release.
Here's the tricky part: MCAS is different for everyone. What works for one person might not work for another, and it's hard to know for sure how you'll respond to treatment.
Not all treatments are available to everyone, and some are only used for really severe cases of MCAS.
In the future, there's hope that treatment can be tailored to what causes your MCAS and what makes it act up. But we need more research to make that happen.
Another thing that can make treatment tricky is that some medicines or the stuff they put in them can actually be triggers for MCAS. So, finding the right treatment can take some time and experiments with your doctor's guidance. But eventually, many people with MCAS find a way to manage it with medicine that works for them.
Resources and Support
Below we have given recommendations of some books, vlogs and podcasts that may be of interest to you.
We have also provided links and contact details for some support services that operate specifically for young adults.
Books
Relaxation and anti stress
The Anxiety Workbook for Teens by Lisa M. Schab - This workbook is designed to help teenagers understand and manage their anxiety through various exercises and activities.
The Relaxation and Stress Reduction Workbook for Kids by Lawrence E. Shapiro and Robin Sprague - Although aimed at kids, this book provides valuable relaxation techniques and stress reduction strategies suitable for teenagers.
Mast Cell and Chronic Illness
The Mast Cell Activation Syndrome (MCAS) Solution by Dr. Jill Carnahan - While not specifically aimed at young people, this book provides valuable information on MCAS, its management, and potential treatments.
Podcasts
Relaxation and anti stress
The Anxiety Coaches Podcast - Hosted by Gina Ryan, this podcast provides practical tips and advice for managing anxiety through mindfulness and other techniques.
Mast Cell and Chronic Illness
The Mast Cell Action Podcast - This podcast specifically addresses MCAS and provides information on how to manage it through interviews with experts and individuals living with the condition.
The Chronically Blonde Podcast - Hosted by Maddie Shively, this podcast explores the experiences of young adults living with chronic illnesses. It offers personal stories, advice, and a sense of community.
The Uninvisible Pod - This podcast, hosted by Lauren Freedman, features interviews with individuals who live with invisible chronic illnesses. It provides insights into their journeys, challenges, and coping strategies.
Vlogs and YouTube Channels
Relaxation and anti stress
Kati Morton - Kati is a licensed therapist who discusses various mental health topics, including anxiety, on her YouTube channel. Her videos are informative and easy to understand.
The Anxiety Guy - This YouTube channel offers videos on anxiety management techniques, including mindfulness exercises and coping strategies.
Tara Brach - Tara Brach's channel includes guided mindfulness and meditation practices that can help with anxiety.
Mast Cell and Chronic Illness
Chronically Jaquie - Jaquie shares her experiences living with multiple chronic illnesses, including EDS and POTS, on her YouTube channel. She provides insights into her daily life and offers advice for managing chronic conditions.
Invisible i - This YouTube channel is dedicated to raising awareness about invisible chronic illnesses and features personal stories, tips, and resources for those living with chronic conditions.
That's Inappropriate - While not exclusively focused on chronic illness, this channel, hosted by Meredith Masony, covers various aspects of parenting, including raising a child with a chronic illness. It can be relatable and informative for parents and young people alike.
Support Services
If you have or feel like you may hurt yourself, you can call 999 and ask for an ambulance or tell an adult you trust and ask them to call 999
Supports children, young people and families across England with emotional and practical care.
Practical information and emotional support for: Young people, young people leaving care and young carers. Provides local services for further support in some regions.
Campaign Against Living Miserably (CALM)
Information and support for anyone who is struggling with things and needs to talk. Offers a helpline and webchat.
A UK-wide database of mental health charities and organisations offering advice and support.
Local mental health services across England and Wales. Offers talking therapies, peer support and advocacy. Check to see if there is a Local Mind near you and what it can offer young people.
Information and advice on mental health and wellbeing for young people. Includes videos about dealing with change, social media and sleep.
Information, support and resources to help young people understand more about mental health and wellbeing. Search the Youth Wellbeing Directory to find services near you.
Self-help books to help people understand and manage their mental health and wellbeing. Also available in Welsh.
116 123
0808 164 0123 (Welsh Language Line)
jo@samaritans.org
Samaritans are open 24/7 for people to talk about any concerns, worries and troubles they’re going through. You can visit some Samaritans branches in person.
85258 (textline)
Shout is a confidential and anonymous 24/7 text support service for anyone struggling to cope. It is free to text Shout from all major mobile networks in the UK. To speak to a trained volunteer, text SHOUT to 85258.
Mental health support for young people, parents and carers. Includes information about mental health problems and medication.
Advice and counselling network for young people. Includes a search tool for finding free local services.
03444 775 774
07537 416 905 (textline)
Advice, support and information for people who experience anxiety.
Advice and support for young people experiencing possible symptoms of mental health problems, like hearing voices or having unusual thoughts. Some services are only available in certain London boroughs.
Provides support to young people experiencing panic attacks and obsessive-compulsive disorder (OCD). Offers a 6-week Youth Mentoring Scheme online or by phone.
Help and advice for young people experiencing suicidal feelings. Provides support and information for anyone worried about another young person.
Support for transgender, nonbinary and gender-diverse people up to 18. Runs events, local groups, online courses and a webchat.
Provides faith and culturally sensitive support to young Muslims by phone, webchat, WhatsApp and email.
Resources
Provides access to their comprehensive library of free mental health resources, including leaflets, apps, videos and guides on a range of topics from Coronavirus advice to anxiety and depression.
Downloadable guides on a range of topics, including 'How to help a friend', 'School to college: managing the transition' and 'Five ways to better wellbeing'.
The Mix is the UK’s leading support service for young people. They are there to help you take on any challenge you’re facing - from mental health to money, from homelessness to finding a job, from break-ups to drugs. Talk to them via their online community, on social, through the free, confidential helpline or their counselling service.
Kooth is an online mental health community. Through their app you can read articles and tips from young people, join conversations on their discussion boards, chat to the team and keep a daily journal.
The Worry Hill is a theory used in behavioural therapy and it explains that when we are anxius, we elevate 'up' the worry hill. When we reach the top we reach our 'panic peak' before we start to coast back down to feeling normal. It can be a useful took in explaining anxious feelings to family and friends.
The Spoon Theory by Christine Miserandino - The "Spoon Theory" is a concept used by many with chronic illnesses to explain their limited energy and daily challenges. It's a helpful metaphor for understanding what it's like to live with a chronic condition.
Become a friend
Sign up to become a Friend of Mast Cell Action so we can keep you up to date on our progress and on how to get involved in our latest campaigns and initiatives.
Donate
Mast Cell Action relies entirely on the generosity of people like you. Please make a donation now and together we can make a difference to those affected by MCAS.