Welcome

Firstly, welcome to our website. We are a small charity called Mast Cell Action and are working hard to support people with MCAS or suspected MCAS and try to make life better for them. We provide lots of resources that can help people with managing their own MCAS and also run online sessions where people with MCAS can come together virtually. Living with MCAS can be really tough, and we hope that the information we provide will help you to navigate life with MCAS.

What are Mast Cells?

Everyone has special blood cells called 'mast cells' in all of their body parts. Their job is to help our bodies stay healthy, especially when something like an injury or an illness happens. When there's a problem, like a cut or a germ trying to make us sick, these mast cells release tiny chemical messengers called 'mediators.' Usually, this is a good thing because these mediators help our bodies fight off the bad stuff and make us feel better. Sometimes, in people with 'MCAS,' these mast cells get a little too active and they release the mediators more often than they should. When that happens, it can cause all sorts of symptoms in different parts of the body, making us feel unwell in many ways, all at once.

Triggers

If you're living with MCAS, you probably know that certain things can set off your symptoms. 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 things 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. You also need to be mindful of your surroundings. Some things like scented candles, perfumes, air fresheners and some cleaning products can set off your MCAS. Keeping your home free of these triggers can help a lot.

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. You got this!

Symptoms

Living with MCAS can be tough. It can bring a bunch of 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 flare up, like a bad infection or a medical procedure. 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. 

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. You could try using our Symptom Log. 

Managing MCAS Yourself

Right now, there's no cure for MCAS, 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.

Avoiding things that make your MCAS worse is really 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.

Managing MCAS With Medicine

There are different medicines that can help with MCAS symptoms. Some make your mast cells relax and not react so much and others block the chemicals that mast cells release.

One thing that can make treatment tricky is that some medicines or the other ingredients in medications can actually be triggers for MCAS. Finding the right treatment can take some time and experiments with your doctor's guidance. Eventually, many people with MCAS find a way to manage it with medicine that works for them.

The Worry Hill

Living with MCAS can sometimes feel like having a bunch of worries piled up like a big mountain. The Worry Hill can help you deal with them one step at a time. Just like climbing a hill, it's about taking small steps to reach the top.

At the bottom of the hill are all your worries – things like managing symptoms, dealing with flare-ups, or explaining your condition to others. It might seem like a lot to handle all at once, so try to identify one worry to focus on. It could be the one that's bothering you the most right now or the one you feel ready to tackle first. Maybe it's finding ways to cope with symptoms during school or navigating social situations with friends.

Emotional Support

Living with MCAS can be emotionally challenging at times, but you're not alone. Try to connect with others who understand what you're going through by joining online support groups.

You could also join our MCAS Young Voices group, to meet with other young people living with MCAS. Talk openly with friends and family about your feelings and experiences, and let them know how they can support you.

Remember to be kind to yourself and acknowledge that it's okay to have bad days. Give yourself permission to rest and recharge when needed. Challenge negative self-talk and replace it with positive affirmations. 

Self Care Practices

It can help to make time to care for yourself whilst living with MCAS.

You might find it helpful to establish a relaxing bedtime routine and create a sleep-friendly environment free of distractions. 

Limiting screen time before bed can also help, as exposure to blue light from electronic devices can interfere with sleep quality.

Make sure you're taking time to do things you enjoy, and be kind to yourself too! 

Stay Positive and Resilient

Although it can be difficult sometimes, try to focus on the things in your life that bring you joy and fulfillment. Where possible, take part in activities that make you smile, whether it's spending time with loved ones, pursuing hobbies, or enjoying nature.

Have you tried practicing Mindfulness? Although not for everyone, mindfulness techniques such as deep breathing or meditation, can help reduce stress and anxiety, allowing you to approach challenges with greater clarity and resilience.

Lastly, always celebrate your achievements! Recognise and celebrate your accomplishments, no matter how small they may seem. Each step forward is a victory worth acknowledging. Surround yourself with positive affirmations and reminders of your strength and resilience.

You are not alone and you can do this!