Parenting or caring for a child or young person with MCAS

As a parent or carer of a child with Mast Cell Activation Syndrome (MCAS), there may be times where you feel lost, especially if this is a new diagnosis.

We know that your child's health and wellbeing are a top priority and Mast Cell Action are here to help you to understand the condition and hopefully help to make your family's journey a little easier. 

Learning that your child has or may have a complex medical condition can be scary and we know there is lots to learn and understand about MCAS and about your child's unique symptoms and triggers.

Taking your time by breaking things into manageable pieces can help you to slowly understand more and learn with your child.

What is MCAS? 

MCAS is a condition of hypersensitivity, your child’s immune system is overreacting to normal environmental and internal interactions. The mast cell is a very important white blood cell, which plays a key role in the body’s defence and immune reactions.

Found throughout the body, especially in the skin, gut and respiratory system, when mast cells come in to contact with foreign bodies (bacteria, allergens and toxins), they go through a process of degranulation. This is where the products (mediators) within the mast cell are released and spread throughout the surrounding tissue. It is these mediators which cause the many symptoms often experienced by those living with MCAS. 

Mediators  

Mediators include a mixture of chemicals that aid in boosting an immune response. Below are the most common mediators found in mast cells, but there are many, many more.  

Histamine is one of the most well-known chemicals found within mast cells and is responsible for causing symptoms such as itching, swelling and redness which are often seen during allergic reactions. Cytokines are also found in mast cells, linked to wound healing and responding to infection, Cytokines act as a messenger, signalling and recruiting other immune cells to boost the effects of the immune system.

Tryptase is an enzyme which is mostly found in mast cells but is also found in many different parts of the body.

This is a type of protein that helps with chemical reactions and is also often seen in allergic reactions. When functioning correctly, these mast cell mediators keep your body healthy and strong, however, in those with MCAS, these mediators and mast cells, are very sensitive and overly active. This results in many different symptoms, some of which can be very serious.

Many different things can trigger these reactions, so identifying and avoiding (where possible) each person's individual triggers is an essential part of managing MCAS. 

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Community and Resources 

Joining our support groups for parents of children with MCAS will connect you with others who share similar experiences and may be on a similar journey. These groups provide a safe space to ask questions and share insights and experiences. 

We have developed lots of resources to help children and families to navigate the complexities associated with having MCAS and to help you to share information about your child’s needs.   

Having to advocate for your child at school, during social activities and at medical appointments can feel daunting, but with time, you will come to understand some of your child’s unique triggers and symptoms and be able to share these so that others can care for them too. Educating others about MCAS can help to create a supportive environment for your child. You may find our Freedom kit helpful when communicating your child’s needs to their school or childcare provider. 

Casper the Chameleon

Our Casper pack was designed to help families living with MCAS to have conversations around MCAS and the feelings associated with living with chronic illness. The pack includes a series of work cards which help families to approach different aspects of living with MCAS, with a key focus on mental health and wellbeing.

You can order you free copy by contacting denise@mastcellaction.org. 

“We're in a tough place at the moment where both our sons have crashed with a huge flare-up of their mast cell disorder. Casper was there to help us open the conversation with them about why their bodies are feeling the way they are and to help them find the words and space to tell us how it feels for them.”

Access support

We know that caring for a child with MCAS can bring about challenges and uncertainties.

This information is designed to offer you valuable insights, practical tips, and emotional support as you navigate this journey with your child.

MCAS can present numerous challenges, but finding a supportive community can provide solace and valuable insights, the sense of belonging and shared understanding can be a lifeline. Within our community, you'll discover a wealth of knowledge, practical tips, and emotional support, helping you navigate the complexities of MCAS.

Together we can empower each other to be resilient advocates for children with MCAS, fostering an environment of love, understanding, and hope in the face of this challenging condition.

You are not alone

Remember, you are not alone, and together we can navigate the most difficult parts of our journeys. 

Living with MCAS is a marathon, not a sprint and taking small steps can help to build a strong foundation for your family. 

Remember, even on the toughest days, you're making a difference. Your love, patience, and dedication are shaping a brighter future for your child. Together, we'll navigate the highs and lows of MCAS, celebrating victories big and small along the way.

You are not alone. Mast Cell Action is here to stand beside you, offering support, understanding, and a community that cares.

Please get in touch for further support.

Our parent and carer peer support sessions run fortnightly on Wednesdays, alternating between 11am and 7pm sessions. Find out more or book your place here.

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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.

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